ALS Focus Wave 1 - Insurance Needs and Financial Burdens Survey (doi:10.7910/DVN/J9TLXT)

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Part 1: Document Description
Part 2: Study Description
Part 3: Data Files Description
Part 4: Variable Description
Part 5: Other Study-Related Materials
Entire Codebook

Document Description
Citation
Title:	ALS Focus Wave 1 - Insurance Needs and Financial Burdens Survey
Identification Number:	doi:10.7910/DVN/J9TLXT
Distributor:	Harvard Dataverse
Date of Distribution:	2021-03-18
Version:	2
Bibliographic Citation:	The ALS Association, 2021, "ALS Focus Wave 1 - Insurance Needs and Financial Burdens Survey", https://doi.org/10.7910/DVN/J9TLXT, Harvard Dataverse, V2, UNF:6:WPfeqPPGCzCXc0z3zFFllQ== [fileUNF]
Study Description
Citation
Title:	ALS Focus Wave 1 - Insurance Needs and Financial Burdens Survey
Identification Number:	doi:10.7910/DVN/J9TLXT
Authoring Entity:	The ALS Association
Other identifications and acknowledgements:	The ALS Association
Other identifications and acknowledgements:	Neurological Clinical Research Institute, Massachusetts General Hospital
Producer:	The ALS Association
Distributor:	Harvard Dataverse
Access Authority:	Sherman, Alexander
Depositor:	Sherman, Alexander
Date of Deposit:	2021-03-09
Holdings Information:	https://doi.org/10.7910/DVN/J9TLXT
Study Scope
Keywords:	Medicine, Health and Life Sciences, Medicine, Health and Life Sciences, ALS, Survey, Focus, Insurance, Financial, Costs, Stress
Abstract:	This NeuroVERSE record contains two files: <ol> <li>ALSFocus_Wave1_Public.csv – This data file contains responses from both the Demographics survey and the survey on Insurance Needs and Financial Burdens, which were fielded in Wave 1 of ALS Focus. This file includes responses collected from February 13, 2020 through April 3, 2020, the launch date and close date of Wave 1, respectively. The file uses a ‘flattened’ format with one record per subject. Variables are organized across the columns with variable names corresponding to the data dictionary. <ul> <li>Subject_ID 199 is a test case and has been removed from the data file as of January 5, 2022.</li> </ul> </li> <li>Wave 1_Data Dictionary_Public.xlsx – This file is the data dictionary for surveys fielded in ALS Focus Wave 1, including the Demographics survey and the survey on Insurance Needs and Financial Burdens. </li> </ol>
Date of Collection:	2020-02-13-2020-04-03
Methodology and Processing
Sources Statement
Data Access
Restrictions:	The Amyotrophic Lateral Sclerosis Association (“The Association”) grants a non-exclusive, non-assignable, non-transferable, royalty free license to use Data for educational and research analyses purposes (“Secondary Analyses”). Data shall not be used for any purpose other than Secondary Analyses. Data Requestor shall not disclose, release, sell, rent, lease, loan, or otherwise grant access to Data to any third party without the prior written consent of The Association. You acknowledge the importance of data privacy of individuals to whom accessed Data may relate, and, accordingly, commit to comply with all applicable data privacy protection laws, not to attempt to identify subjects, and not to combine accessed Data with other sources of data that would lead to the deliberate identification of any individual..
Access Authority:	Sarah Parvanta<br/> ALSFocus@alsa-national.org<br/> 202-464-8847<br/>
Citation Requirement:	The Association must be acknowledged as the source of Data in all written, visual, or oral public disclosures concerning Your research using Data, and a link to the Direct Object Identifier (DOI) must be included in all written disclosures concerning Your research using Data. Additionally, You are permitted to disclose Data to a journal publication that will be publishing or disseminating discoveries derived from Data as long as a link to the DOI is included in the written discoveries. See the data citation, generated by the Dataverse.
Disclaimer:	The Association reserves the right to withhold, remove, and/or discard Data from the Dataverse without notice to You. Except to the extent prohibited by law, You assume all liability for damages which may arise from Your use, storage, disclosure, or disposal of Data. The Association will not be liable to You for any loss, claim, or demand You make, or made against You by any other party, due to or arising from the use of Data by You, except to the extent permitted by law when caused by the gross negligence or willful misconduct of The Association.
Notes:	<p><b>DATA SHARING TERMS</b></p> <p>These Data Sharing Terms ("Terms") are effective as of the date of Your acceptance ("Effective Date") and are between you ("You" or "Your") and The Amyotrophic Lateral Sclerosis Association ("The Association"), which specifically states the license terms, liability, limitations and warranty relating to Your use of the ALS Focus Data and corresponding Data Dictionary ("Data").</p> <p><b>I. Limited Rights of Use and Restrictions</b></p> <p><b>a.</b>   By accepting these Terms, The Association grants You a non-exclusive, non-assignable, non-transferable, royalty free license to use Data for educational and research analyses purposes ("Secondary Analyses"). You agree that all rights, titles, and interests relating to Data belong to The Association, or to the owner of Data you use. Furthermore, you agree that you do not assert any title or interest in Data other than the rights and license granted in these Terms. </p> <p><b>b.</b>   You agree that you do not have any rights to copyright, rights to trademark ownership or patents, or any other rights or licenses that belong either to The Association, or to the owner of Data, other than those given in these Terms. </p> <p><b>c.</b>   Data shall not be used for any purpose other than Secondary Analyses. You acknowledge the importance of data privacy of individuals to whom accessed Data may relate, and, accordingly, commit to comply with all applicable data privacy protection laws, not to attempt to identify subjects, and not to combine accessed Data with other sources of data that would lead to the deliberate identification of any individual. </p> <p><b>d.</b>   Except as set forth in Section III.a., You agree that You will be the only one to retain control over Data and shall not disclose, release, sell, rent, lease, loan, or otherwise grant access to Data to any third party without the prior written consent of The Association. </p> <p><b>e.</b>   You agree to use Data in compliance with all applicable laws, rules, and regulations, as well as all professional standards applicable to such research, including the completion of any Institutional Review Board (IRB) or ethics review or approval that may be required. It is Your responsibility to determine whether IRB or ethics review or approval is needed and what laws, rules, regulations, and professional standards apply to You. </p> <p><b>f.</b>   You shall promptly report to The Association any use or disclosure of Data not provided for by these Terms of which You become aware. </p> <p><b>g.</b>   You are not authorized in any manner to use The Association's name, logos, web graphics, or trademarks without express written permission from The Association except as permitted under Section III below. </p> <p><b>II. Termination of these Terms</b></p> <p><b>a.</b>   You agree that The Association may terminate these Terms at any time without notice if Data were used by you in violation of any law or of any terms or limitations imposed by these Terms. </p> <p><b>b.</b>   If these Terms are terminated, the license granted under these Terms will be revoked, and you must either destroy Data or return to The Association. </p> <p><b>III. Publication and Citation Requirements</b></p> <p><b>a</b>   You are encouraged to publish and disseminate discoveries derived from Data. You must acknowledge The Association as the source of Data in all written, visual, or oral public disclosures concerning Your research using Data and include a link to the Direct Object Identifier (DOI) in all written disclosures concerning Your research using Data. Additionally, You are permitted to disclose Data to a journal publication that will be publishing or disseminating discoveries derived from Data as long as a link to the DOI is included in the written discoveries. See the data citation, generated by the Dataverse. </p> <p><b>IV. Acceptance of Risk</b> <p>YOU AGREE THAT USING DATA IS ENTIRELY AT YOUR OWN RISK. DATA ARE PROVIDED "AS IS" WITHOUT ANY WARRANTY OR FITNESS FOR ANY PURPOSE WHATSOEVER, EITHER EXPRESSLY OR IMPLIED OR THAT THE USE OF DATA WILL NOT INFRINGE ANY PATENT, COPYRIGHT, TRADEMARK, OR OTHER PROPRIETARY RIGHTS. THE ASSOCIATION DISCLAIMS ALL AND ANY RESPONSIBILITY FOR WARRANTY OR FITNESS FOR A PARTICULAR PURPOSE. YOU AGREE AND UNDERSTAND THAT DATA MAY CONTAIN ERRORS, OMISSIONS AND/OR INACCURACIES. NOTWITHSTANDING, THE ASSOCIATION, TO THE BEST OF ITS KNOWLEDGE AND BELIEF, HAS THE RIGHT AND AUTHORITY TO PROVIDE DATA TO YOU FOR SECONDARY ANALYSES. </p> <p><b>V. Indemnity</b><p> <p> You agree to indemnify, defend and hold blameless The Association, its officers, directors, employees, agents, successors, assigns, contractors, and grantees (the "Association Indemnitees") against any and all damages or loss incurred by you, including without limitation any legal fees, as a result of or in connection with Your use of Data. </p>
	<p> <b>TERMS OF ACCESS</b> </p> <p> <b>When you download a file:</b> </p> <p> The ALS Association and Harvard Dataverse administrators collects your personal information, specifically name, email address, institution, and position. </p> <p> <b>How we use this information:</b> </p> <p> The ALS Association and Harvard Dataverse administrators use the information you provide to fulfill online requests, understand which research fields are utilizing ALS Focus data, follow publications, reports, and presentations that use ALS Focus data, or in other ways as allowed by law. <p> <b>We may use your information:</b> <ul> <li>To respond to your requests</li> <li>To communicate changes to our terms of use</li> </ul> <b>Access to your information:</b> <p> Only those who need the provided information to perform a specific task have access to your information. These are authorized members of The ALS Association and Harvard Dataverse administrators. </p> <p> The ALS Association keeps personal information on file, but does not share, sell, license or transmit this information to third parties or external vendors unless required to do so by legal, judicial or governmental proceedings. </p>
Other Study Description Materials
File Description--f5745466
File: ALSFocus_Wave1_Public.tab
	Number of cases: 529 No. of variables per record: 382 Type of File: text/tab-separated-values
Notes:	UNF:6:S6UD5mVYy2MbkFdqh7qoGw==
File Description--f4441016
File: Wave 1_Data Dictionary_Public.tab
	Number of cases: 1044 No. of variables per record: 11 Type of File: text/tab-separated-values
Notes:	UNF:6:fomR0BBqFk6fIpV2EomhqQ==
Variable Description
List of Variables:	subject_id - subject_id neurostamp - neurostamp group - group s2_icf_us - s2_icf_us cf2_consent_to_study - cf2_consent_to_study cf1_agree_to_study - cf1_agree_to_study demo_start_dt - demo_start_dt ins_needs_start_dt - ins_needs_start_dt demo_completion_dt - demo_completion_dt ins_needs_completion_dt - ins_needs_completion_dt d1_age - d1_age d2_gender - d2_gender d3_sex_at_birth - d3_sex_at_birth d4_ethnicity - d4_ethnicity d5_race_americanindian_alaskanat - d5_race_americanindian_alaskanat d5_race_asian - d5_race_asian d5_race_black - d5_race_black d5_race_nativehawaiian_pacificis - d5_race_nativehawaiian_pacificis d5_race_white - d5_race_white d5_race_pnta - d5_race_pnta d6_veteran - d6_veteran d7_education - d7_education d8_language - d8_language d9_state - d9_state d9_urbanicity - d9_urbanicity d10_marital_status - d10_marital_status p1_als_type - p1_als_type p2_genetic_testing - p2_genetic_testing p3_1st_symp_location - p3_1st_symp_location p4_onset_month - p4_onset_month p4_onset_year - p4_onset_year p4_pnta - p4_pnta p4_dk - p4_dk p4_onset_date - p4_onset_date p5_diagnosis_month - p5_diagnosis_month p5_diagnosis_year - p5_diagnosis_year p5_pnta - p5_pnta p5_dk - p5_dk p5_diagnosis_date - p5_diagnosis_date p6_inc_pre_diagnosis - p6_inc_pre_diagnosis p7_inc_current - p7_inc_current p8_employ_pre_diagnosis - p8_employ_pre_diagnosis p8_employ_pre_diagnosis_oe - p8_employ_pre_diagnosis_oe p9_employ_current - p9_employ_current p9_employ_current_oe - p9_employ_current_oe p10_1_no_care - p10_1_no_care p10_2_care_visit - p10_2_care_visit p10_3_share_home - p10_3_share_home p10_4_facility - p10_4_facility p10_5_pnta - p10_5_pnta p10_6_other - p10_6_other p10_living_oe - p10_living_oe p11_multi_clinic - p11_multi_clinic p12_clinic_commute - p12_clinic_commute p13_medicare - p13_medicare p13_va_insur - p13_va_insur p13_tricare - p13_tricare p13_medicaid - p13_medicaid p13_empl_insur - p13_empl_insur p13_private_insur - p13_private_insur p13_tribal - p13_tribal p13_no_insur - p13_no_insur p13_insur_dk - p13_insur_dk p13_other_insur - p13_other_insur p13_other_insur_oe - p13_other_insur_oe c0_professional_cg - c0_professional_cg c1_employ_current_cg - c1_employ_current_cg c1_employ_current_cg_oe - c1_employ_current_cg_oe c2_living_cg - c2_living_cg c2_living_cg_oe - c2_living_cg_oe c3_inc_current_cg - c3_inc_current_cg c4_last_provide_care_cg - c4_last_provide_care_cg o1_aslfrsr_score - o1_aslfrsr_score o1_alsfrsr_month - o1_alsfrsr_month o2_alsfrsr_year - o2_alsfrsr_year o1_alsfrsr_dk - o1_alsfrsr_dk o1_alsfrsr_pnta - o1_alsfrsr_pnta o2_vc_indication - o2_vc_indication o2_vc_percent - o2_vc_percent o2_vc_month - o2_vc_month o2_vc_year - o2_vc_year o2_vc_dk - o2_vc_dk o2_vc_pnta - o2_vc_pnta q1_passed - q1_passed q2_access_pals - q2_access_pals q2_access_cg - q2_access_cg q3_know_insurance_cg - q3_know_insurance_cg q4_know_expense_cg - q4_know_expense_cg q5_medicare - q5_medicare q5_va_insur - q5_va_insur q5_tricare - q5_tricare q5_medicaid - q5_medicaid q5_empl_insur - q5_empl_insur q5_private_insur - q5_private_insur q5_no_insur - q5_no_insur q5_insur_dk - q5_insur_dk q5_other_insur - q5_other_insur q5_other_insur_oe - q5_other_insur_oe q6_medadv - q6_medadv q6_medfee - q6_medfee q6_medd - q6_medd q6_medsupp - q6_medsupp q6_med_dk - q6_med_dk q7_va_primsec - q7_va_primsec q7_tricare_primsec - q7_tricare_primsec q7_medicaid_primsec - q7_medicaid_primsec q7_empl_primsec - q7_empl_primsec q7_priv_primsec - q7_priv_primsec q7_other_primsec - q7_other_primsec q8_ssdi - q8_ssdi q9a_name_va - q9a_name_va q9a_name_va_dk - q9a_name_va_dk q9a_name_va_pnta - q9a_name_va_pnta q9a_name_tricare - q9a_name_tricare q9a_name_tricare_dk - q9a_name_tricare_dk q9a_name_tricare_pnta - q9a_name_tricare_pnta q9a_name_empl - q9a_name_empl q9a_name_empl_dk - q9a_name_empl_dk q9a_name_empl_pnta - q9a_name_empl_pnta q9a_name_priv - q9a_name_priv q9a_name_priv_dk - q9a_name_priv_dk q9a_name_priv_pnta - q9a_name_priv_pnta q9a_name_other - q9a_name_other q9a_name_other_dk - q9a_name_other_dk q9a_name_other_pnta - q9a_name_other_pnta q9a_name_medd - q9a_name_medd q9a_name_medd_dk - q9a_name_medd_dk q9a_name_medd_pnta - q9a_name_medd_pnta q9a_name_medsupp - q9a_name_medsupp q9a_name_medsupp_dk - q9a_name_medsupp_dk q9a_name_medsupp_pnta - q9a_name_medsupp_pnta q9a_name_medadv - q9a_name_medadv q9a_name_medadv_dk - q9a_name_medadv_dk q9a_name_medadv_pnta - q9a_name_medadv_pnta q9b_policy_va - q9b_policy_va q9b_policy_tricare - q9b_policy_tricare q9b_policy_empl - q9b_policy_empl q9b_policy_priv - q9b_policy_priv q9b_policy_other - q9b_policy_other q9c_related_va - q9c_related_va q9c_related_tricare - q9c_related_tricare q9c_related_empl - q9c_related_empl q9c_related_priv - q9c_related_priv q9c_related_other - q9c_related_other q9d_family_va - q9d_family_va q9d_family_tricare - q9d_family_tricare q9d_family_empl - q9d_family_empl q9d_family_priv - q9d_family_priv q9d_family_other - q9d_family_other q9e1_prem_va - q9e1_prem_va q9e1_prem_va_dk - q9e1_prem_va_dk q9e2_prem_freq_va - q9e2_prem_freq_va q9e1_prem_tricare - q9e1_prem_tricare q9e1_prem_tricare_dk - q9e1_prem_tricare_dk q9e2_prem_freq_tricare - q9e2_prem_freq_tricare q9e1_prem_empl - q9e1_prem_empl q9e1_prem_empl_dk - q9e1_prem_empl_dk q9e2_prem_freq_empl - q9e2_prem_freq_empl q9e1_prem_priv - q9e1_prem_priv q9e1_prem_priv_dk - q9e1_prem_priv_dk q9e2_prem_freq_priv - q9e2_prem_freq_priv q9e1_prem_other - q9e1_prem_other q9e1_prem_other_dk - q9e1_prem_other_dk q9e2_prem_freq_other - q9e2_prem_freq_other q9e1_prem_medfee - q9e1_prem_medfee q9e1_prem_medfee_dk - q9e1_prem_medfee_dk q9e2_prem_freq_medfee - q9e2_prem_freq_medfee q9e1_prem_medd - q9e1_prem_medd q9e1_prem_medd_dk - q9e1_prem_medd_dk q9e2_prem_freq_medd - q9e2_prem_freq_medd q9e1_prem_medsupp - q9e1_prem_medsupp q9e1_prem_medsupp_dk - q9e1_prem_medsupp_dk q9e2_prem_freq_medsupp - q9e2_prem_freq_medsupp q9e1_prem_medadv - q9e1_prem_medadv q9e1_prem_medadv_dk - q9e1_prem_medadv_dk q9e2_premfreq_medadv - q9e2_premfreq_medadv q9f_deduct_va - q9f_deduct_va q9f_deduct_va_dk - q9f_deduct_va_dk q9f_deduct_tricare - q9f_deduct_tricare q9f_deduct_tricare_dk - q9f_deduct_tricare_dk q9f_deduct_empl - q9f_deduct_empl q9f_deduct_empl_dk - q9f_deduct_empl_dk q9f_deduct_priv - q9f_deduct_priv q9f_deduct_priv_dk - q9f_deduct_priv_dk q9f_deduct_other - q9f_deduct_other q9f_deduct_other_dk - q9f_deduct_other_dk q9f_deduct_medd - q9f_deduct_medd q9f_deduct_medd_dk - q9f_deduct_medd_dk q9f_deduct_medsupp - q9f_deduct_medsupp q9f_deduct_medsupp_dk - q9f_deduct_medsupp_dk q9f_deduct_medadv - q9f_deduct_medadv q9f_deduct_medadv_dk - q9f_deduct_medadv_dk q9g_max_va - q9g_max_va q9g_max_va_dk - q9g_max_va_dk q9g_max_tricare - q9g_max_tricare q9g_max_tricare_dk - q9g_max_tricare_dk q9g_max_empl - q9g_max_empl q9g_max_empl_dk - q9g_max_empl_dk q9g_max_priv - q9g_max_priv q9g_max_priv_dk - q9g_max_priv_dk q9g_max_other - q9g_max_other q9g_max_other_dk - q9g_max_other_dk q9g_max_medd - q9g_max_medd q9g_max_medd_dk - q9g_max_medd_dk q9g_max_medsupp - q9g_max_medsupp q9g_max_medsupp_dk - q9g_max_medsupp_dk q9g_max_medadv - q9g_max_medadv q9g_max_medadv_dk - q9g_max_medadv_dk q10_wheelchair - q10_wheelchair q10_respiratory - q10_respiratory q10_comm_device - q10_comm_device q10_home_mod - q10_home_mod q10_vehicle - q10_vehicle q10_gene - q10_gene q10_supplies - q10_supplies q10_other - q10_other q10_other_oe - q10_other_oe q10_pnta - q10_pnta q10_other_fill_in - q10_other_fill_in q11_pay_wheelchair - q11_pay_wheelchair q11_pay_resiratory - q11_pay_resiratory q11_pay_comm_device - q11_pay_comm_device q11_pay_home_mod - q11_pay_home_mod q11_pay_vehicle - q11_pay_vehicle q11_pay_gene - q11_pay_gene q11_pay_supplies - q11_pay_supplies q11_pay_other - q11_pay_other q12_cost_wheelchair - q12_cost_wheelchair q12_cost_respiratory - q12_cost_respiratory q12_cost_comm_device - q12_cost_comm_device q12_cost_home_mod - q12_cost_home_mod q12_cost_vehicle - q12_cost_vehicle q12_cost_gene - q12_cost_gene q12_cost_supplies - q12_cost_supplies q12_cost_other - q12_cost_other q13_unable_wheelchair - q13_unable_wheelchair q13_unable_respiratory - q13_unable_respiratory q13_unable_comm_device - q13_unable_comm_device q13_unable_home_mod - q13_unable_home_mod q13_unable_vehicle - q13_unable_vehicle q13_unable_gene - q13_unable_gene q13_unable_supplies - q13_unable_supplies q13_unable_other - q13_unable_other q13_unable_pnta - q13_unable_pnta q13_unable_na - q13_unable_na q13_unable_fill_in - q13_unable_fill_in q14_burden_one_time - q14_burden_one_time q14_burden_one_time_na - q14_burden_one_time_na q14_burden_one_time_pnta - q14_burden_one_time_pnta q14_burden_one_time_dk - q14_burden_one_time_dk q15_drugs - q15_drugs q15_care - q15_care q15_activities - q15_activities q15_allied_health - q15_allied_health q15_hospital - q15_hospital q15_clinic - q15_clinic q15_outpatient - q15_outpatient q15_assisted_living - q15_assisted_living q15_supplies - q15_supplies q15_other - q15_other q15_other_oe - q15_other_oe q15_pnta - q15_pnta q15_na - q15_na q15_other_fill_in - q15_other_fill_in q16_pay_drugs - q16_pay_drugs q16_pay_care - q16_pay_care q16_pay_activities - q16_pay_activities q16_pay_allied_health - q16_pay_allied_health q16_pay_hospital - q16_pay_hospital q16_pay_clinic - q16_pay_clinic q16_pay_outpatient - q16_pay_outpatient q16_pay_assisted_living - q16_pay_assisted_living q16_pay_supplies - q16_pay_supplies q16_pay_other - q16_pay_other q17_cost_drugs - q17_cost_drugs q17_cost_care - q17_cost_care q17_cost_activities - q17_cost_activities q17_cost_allied_health - q17_cost_allied_health q17_cost_hospital - q17_cost_hospital q17_cost_clinic - q17_cost_clinic q17_cost_outpatient - q17_cost_outpatient q17_cost_assisted_living - q17_cost_assisted_living q17_cost_supplies - q17_cost_supplies q17_cost_other - q17_cost_other q18_unable_drugs - q18_unable_drugs q18_unable_care - q18_unable_care q18_unable_activities - q18_unable_activities q18_unable_allied_health - q18_unable_allied_health q18_unable_hospital - q18_unable_hospital q18_unable_clinic - q18_unable_clinic q18_unable_outpatient - q18_unable_outpatient q18_unable_assisted_living - q18_unable_assisted_living q18_unable_supplies - q18_unable_supplies q18_unable_other - q18_unable_other q18_unable_pnta - q18_unable_pnta q18_unable_na - q18_unable_na q18_unable_fill_in - q18_unable_fill_in q19_burden_recur - q19_burden_recur q19_burden_recur_na - q19_burden_recur_na q19_burden_recur_pnta - q19_burden_recur_pnta q19_burden_recur_dk - q19_burden_recur_dk q20_va_home - q20_va_home q20_va_vehicle - q20_va_vehicle q20_va_wheelchair - q20_va_wheelchair q20_va_dk - q20_va_dk q20_va_none - q20_va_none q21_borrow - q21_borrow q22_bankrupt - q22_bankrupt q23_working - q23_working q24_maintain_insur - q24_maintain_insur q25_lose_insur - q25_lose_insur q26_lose_work_insur - q26_lose_work_insur q27_stop_work_pals - q27_stop_work_pals q28_stop_work_cg - q28_stop_work_cg q29_qualify_medicare - q29_qualify_medicare q29_qualify_medicaid - q29_qualify_medicaid q29_no_qualify - q29_no_qualify q29_pnta - q29_pnta q30_1_treatments - q30_1_treatments q30_1_treatments_na - q30_1_treatments_na q30_2_services - q30_2_services q30_2_services_na - q30_2_services_na q30_3_devices - q30_3_devices q30_3_devices_na - q30_3_devices_na q30_4_understand - q30_4_understand q30_4_understand_na - q30_4_understand_na q30_5_paperwork - q30_5_paperwork q30_5_paperwork_na - q30_5_paperwork_na q30_6_bill_disputes - q30_6_bill_disputes q30_6_bill_disputes_na - q30_6_bill_disputes_na q30_7_appeals - q30_7_appeals q30_7_appeals_na - q30_7_appeals_na q30_8_collectors - q30_8_collectors q30_8_collectors_na - q30_8_collectors_na q9e1_prem_empl_new2 - q9e1_prem_empl_new2 q9e1_prem_medadv_new2 - q9e1_prem_medadv_new2 q9e1_prem_medd_new2 - q9e1_prem_medd_new2 q9e1_prem_medfee_new2 - q9e1_prem_medfee_new2 q9e1_prem_medsupp_new2 - q9e1_prem_medsupp_new2 q9e1_prem_other_new2 - q9e1_prem_other_new2 q9e1_prem_priv_new2 - q9e1_prem_priv_new2 q9e1_prem_tricare_new2 - q9e1_prem_tricare_new2 q9e2empl_new2 - q9e2empl_new2 q9e2medadv_new2 - q9e2medadv_new2 q9e2medd_new2 - q9e2medd_new2 q9e2medfee_new2 - q9e2medfee_new2 q9e2medsupp_new2 - q9e2medsupp_new2 q9e2oth_new2 - q9e2oth_new2 q9e2priv_new2 - q9e2priv_new2 q9e2tricare_new2 - q9e2tricare_new2 q9f_deduct_empl_new2 - q9f_deduct_empl_new2 q9f_deduct_medadv_new2 - q9f_deduct_medadv_new2 q9f_deduct_medd_new2 - q9f_deduct_medd_new2 q9f_deduct_medsupp_new2 - q9f_deduct_medsupp_new2 q9f_deduct_other_new2 - q9f_deduct_other_new2 q9f_deduct_priv_new2 - q9f_deduct_priv_new2 q9f_deduct_tricare_new2 - q9f_deduct_tricare_new2 q9g_max_empl_new2 - q9g_max_empl_new2 q9g_max_medadv_new2 - q9g_max_medadv_new2 q9g_max_medd_new2 - q9g_max_medd_new2 q9g_max_medsupp_new2 - q9g_max_medsupp_new2 q9g_max_other_new2 - q9g_max_other_new2 q9g_max_priv_new2 - q9g_max_priv_new2 q9g_max_tricare_new2 - q9g_max_tricare_new2 q12_cost_comm_device_new2 - q12_cost_comm_device_new2 q12_cost_gene_new2 - q12_cost_gene_new2 q12_cost_home_mod_new2 - q12_cost_home_mod_new2 q12_cost_respiratory_new2 - q12_cost_respiratory_new2 q12_cost_vehicle_new2 - q12_cost_vehicle_new2 q12_cost_wheelchair_new2 - q12_cost_wheelchair_new2 q12_cost_supplies_new2 - q12_cost_supplies_new2 q12_cost_other_new2 - q12_cost_other_new2 q17_cost_activities_new2 - q17_cost_activities_new2 q17_cost_allied_health_new2 - q17_cost_allied_health_new2 q17_cost_assisted_living_new2 - q17_cost_assisted_living_new2 q17_cost_care_new2 - q17_cost_care_new2 q17_cost_clinic_new2 - q17_cost_clinic_new2 q17_cost_drugs_new2 - q17_cost_drugs_new2 q17_cost_hospital_new2 - q17_cost_hospital_new2 q17_cost_outpatient_new2 - q17_cost_outpatient_new2 q17_cost_supplies_new2 - q17_cost_supplies_new2 q17_cost_other_new2 - q17_cost_other_new2 VariableName - VariableName QuestionNumber - QuestionNumber ALSFocusSurvey(Wave1) - ALSFocusSurvey(Wave1) QuestionDescription - QuestionDescription QuestionforPersonwithALS - QuestionforPersonwithALS QuestionforCurrentCaregiver - QuestionforCurrentCaregiver QuestionforPastCaregiver - QuestionforPastCaregiver VariableLabel - VariableLabel ResponseOptions - ResponseOptions Value - Value ValueLabel - ValueLabel
Variables
subject_id
f5745466 Location:	Summary Statistics: Max. 734.0; Mean 360.1058601134221; Min. 5.0; StDev 214.75346185445494; Valid 529.0; Variable Format: numeric Notes: UNF:6:wGdX/ozN9zgKkDuy+vJ95A==
neurostamp
f5745466 Location:	Variable Format: character Notes: UNF:6:U66d4CNZvTlmqs1EzqXbrA==
group
f5745466 Location:	Variable Format: character Notes: UNF:6:5gpdJp1TKMpDpeiPzxwRmw==
s2_icf_us
f5745466 Location:	Variable Format: character Notes: UNF:6:yVYcOBinNE9m9Yo9dzsTRA==
cf2_consent_to_study
f5745466 Location:	Variable Format: character Notes: UNF:6:yVYcOBinNE9m9Yo9dzsTRA==
cf1_agree_to_study
f5745466 Location:	Variable Format: character Notes: UNF:6:yVYcOBinNE9m9Yo9dzsTRA==
demo_start_dt
f5745466 Location:	Variable Format: character Notes: UNF:6:O5J2iVZvStxN46FXLr75Tw==
ins_needs_start_dt
f5745466 Location:	Variable Format: character Notes: UNF:6:O5J2iVZvStxN46FXLr75Tw==
demo_completion_dt
f5745466 Location:	Variable Format: character Notes: UNF:6:PWqDghYWhVYiBtBaySRn0A==
ins_needs_completion_dt
f5745466 Location:	Variable Format: character Notes: UNF:6:6jJUUEggpxW9SXHl2eYaYg==
d1_age
f5745466 Location:	Variable Format: character Notes: UNF:6:qttNEMuChI+FThDNulXU4A==
d2_gender
f5745466 Location:	Variable Format: character Notes: UNF:6:RKec+VWXIgHUPNuDotVY2Q==
d3_sex_at_birth
f5745466 Location:	Variable Format: character Notes: UNF:6:5FroQWbypiIrOLTLL5Y4LA==
d4_ethnicity
f5745466 Location:	Variable Format: character Notes: UNF:6:SMQClKedCvhanrSp+lkcmA==
d5_race_americanindian_alaskanat
f5745466 Location:	Variable Format: character Notes: UNF:6:HfatSnXkjV6BCNSieZVcYQ==
d5_race_asian
f5745466 Location:	Variable Format: character Notes: UNF:6:nmOV/t0fVrwch5910G+nzQ==
d5_race_black
f5745466 Location:	Variable Format: character Notes: UNF:6:07/S2qWE32srTAxrXhTZ0g==
d5_race_nativehawaiian_pacificis
f5745466 Location:	Variable Format: character Notes: UNF:6:yHU3IXOTO5YoTRS2ZCqjPg==
d5_race_white
f5745466 Location:	Variable Format: character Notes: UNF:6:VBwpYxPoVHy0iVP+yt2d8Q==
d5_race_pnta
f5745466 Location:	Variable Format: character Notes: UNF:6:NIX94Q0fvIKVrfCvlQLgbw==
d6_veteran
f5745466 Location:	Variable Format: character Notes: UNF:6:KbXgQj0mo/d998mUtR6hCg==
d7_education
f5745466 Location:	Variable Format: character Notes: UNF:6:/jjqKrabxfbYyLKQxJohRg==
d8_language
f5745466 Location:	Variable Format: character Notes: UNF:6:HKEXp6mxGlzDok5lGBG9pA==
d9_state
f5745466 Location:	Variable Format: character Notes: UNF:6:3Q6kVAJCHRUK3C2RbrRk3A==
d9_urbanicity
f5745466 Location:	Variable Format: character Notes: UNF:6:mocKQ2vW3MSQgXRPC6F+Kw==
d10_marital_status
f5745466 Location:	Variable Format: character Notes: UNF:6:PyFp7y14f3bCtFZG9EzfdA==
p1_als_type
f5745466 Location:	Variable Format: character Notes: UNF:6:BtgJAmS2cYzQPnUMizPlKw==
p2_genetic_testing
f5745466 Location:	Variable Format: character Notes: UNF:6:2ZH7q1Q9sn7L+JVSF5QJjg==
p3_1st_symp_location
f5745466 Location:	Variable Format: character Notes: UNF:6:QoAwfK7Lf+JZDiDdVTp8ag==
p4_onset_month
f5745466 Location:	Variable Format: character Notes: UNF:6:JV+8yKwFYNCOH2rm+ToCPg==
p4_onset_year
f5745466 Location:	Summary Statistics: Mean 2006.0657894736842; StDev 119.93878785986914; Min. 207.0; Valid 228.0; Max. 2020.0 Variable Format: numeric Notes: UNF:6:dNvm+kBgw9xa6ES3DIIq4Q==
p4_pnta
f5745466 Location:	Variable Format: character Notes: UNF:6:cYlymZKT73H2j9rMIwvrKQ==
p4_dk
f5745466 Location:	Variable Format: character Notes: UNF:6:73lZj6Ww9oqwQPdAbhKqmw==
p4_onset_date
f5745466 Location:	Variable Format: character Notes: UNF:6:fbwveH5QnYqRmiqBBqckCQ==
p5_diagnosis_month
f5745466 Location:	Variable Format: character Notes: UNF:6:Icv3bxmJuFItofEtf/Kl1g==
p5_diagnosis_year
f5745466 Location:	Summary Statistics: StDev 65.42138081817926; Valid 236.0; Min. 1993.0; Max. 3019.0; Mean 2020.385593220339 Variable Format: numeric Notes: UNF:6:ZQbWtBDDgnpy1ChOrtEFhw==
p5_pnta
f5745466 Location:	Summary Statistics: Min. NaN; Max. NaN; StDev NaN; Valid 0.0; Mean NaN Variable Format: numeric Notes: UNF:6:zK3ypEp8BsN5HR5fAPoV4w==
p5_dk
f5745466 Location:	Variable Format: character Notes: UNF:6:7fyglbeJW7kIVdxteYV7iQ==
p5_diagnosis_date
f5745466 Location:	Variable Format: character Notes: UNF:6:S0uk9lu/XEbyp+T49h4UNg==
p6_inc_pre_diagnosis
f5745466 Location:	Variable Format: character Notes: UNF:6:ymGq43dcIrNZKfvE1Qq2LA==
p7_inc_current
f5745466 Location:	Variable Format: character Notes: UNF:6:QP2qSEo3XAmrMfbxz3Mc/g==
p8_employ_pre_diagnosis
f5745466 Location:	Variable Format: character Notes: UNF:6:zaYLRIVH8XgDVFdjNakMGQ==
p8_employ_pre_diagnosis_oe
f5745466 Location:	Variable Format: character Notes: UNF:6:98WBBzuhoQ5o8untqNw4OQ==
p9_employ_current
f5745466 Location:	Variable Format: character Notes: UNF:6:j2+GeO+jkktKN/ePPluPzA==
p9_employ_current_oe
f5745466 Location:	Variable Format: character Notes: UNF:6:1OofYo3QXR9ZlEEzjOxV6g==
p10_1_no_care
f5745466 Location:	Variable Format: character Notes: UNF:6:AcFS8LyGmkUXa4fTaO9AlQ==
p10_2_care_visit
f5745466 Location:	Variable Format: character Notes: UNF:6:O1fmAkwQkroRS2qTSsqLuw==
p10_3_share_home
f5745466 Location:	Variable Format: character Notes: UNF:6:tmEbSaZXEPvQx/BiVHyriQ==
p10_4_facility
f5745466 Location:	Variable Format: character Notes: UNF:6:1CZnByzPe5R6Tx1wvLAbZA==
p10_5_pnta
f5745466 Location:	Variable Format: character Notes: UNF:6:BIQzuzAgxQVB7XBTnBK5Ng==
p10_6_other
f5745466 Location:	Variable Format: character Notes: UNF:6:mYPwsHKGvXEuL6F7MBXppw==
p10_living_oe
f5745466 Location:	Variable Format: character Notes: UNF:6:IDnHk8rFLb5lKULnuJWw5A==
p11_multi_clinic
f5745466 Location:	Variable Format: character Notes: UNF:6:vH4J0HtJuldYzxv0LtQFxQ==
p12_clinic_commute
f5745466 Location:	Variable Format: character Notes: UNF:6:kT0YoSX8HdSt/jA5q6PrVg==
p13_medicare
f5745466 Location:	Variable Format: character Notes: UNF:6:MqW3aGM467FbmIybAT4qRA==
p13_va_insur
f5745466 Location:	Variable Format: character Notes: UNF:6:rjZjjC7RhnSQm6jBlRgzaA==
p13_tricare
f5745466 Location:	Variable Format: character Notes: UNF:6:CvLFNiIBMvP4g7oepOyQnw==
p13_medicaid
f5745466 Location:	Variable Format: character Notes: UNF:6:dbq8Q2E3GYUQBli8LfHLCQ==
p13_empl_insur
f5745466 Location:	Variable Format: character Notes: UNF:6:ICYQmQ59SQwPgJhxmaP6HQ==
p13_private_insur
f5745466 Location:	Variable Format: character Notes: UNF:6:Q4ixY17ps7GzeimjxI+2dg==
p13_tribal
f5745466 Location:	Variable Format: character Notes: UNF:6:BIQzuzAgxQVB7XBTnBK5Ng==
p13_no_insur
f5745466 Location:	Variable Format: character Notes: UNF:6:oW8xcpd/SUIQEfUhvtjvSQ==
p13_insur_dk
f5745466 Location:	Variable Format: character Notes: UNF:6:BIQzuzAgxQVB7XBTnBK5Ng==
p13_other_insur
f5745466 Location:	Variable Format: character Notes: UNF:6:KVCkqD+wzNTQc6cKyQo5dQ==
p13_other_insur_oe
f5745466 Location:	Variable Format: character Notes: UNF:6:a71qY9y2bBYiS9yfBQqccw==
c0_professional_cg
f5745466 Location:	Variable Format: character Notes: UNF:6:d22ee3ikgDoMCdKWaERSpA==
c1_employ_current_cg
f5745466 Location:	Variable Format: character Notes: UNF:6:daqu42QzWyT3b3xj/V8mfQ==
c1_employ_current_cg_oe
f5745466 Location:	Variable Format: character Notes: UNF:6:+I6gfiqpFp10+A1pwwRrfg==
c2_living_cg
f5745466 Location:	Variable Format: character Notes: UNF:6:8swiHoxtu1sfMXmTZm5XNQ==
c2_living_cg_oe
f5745466 Location:	Variable Format: character Notes: UNF:6:qMIXFePE7IzwgMI+1Wmnxw==
c3_inc_current_cg
f5745466 Location:	Variable Format: character Notes: UNF:6:59SMPvdbByZGNCmxJVXCSQ==
c4_last_provide_care_cg
f5745466 Location:	Variable Format: character Notes: UNF:6:pbkRkBxAPhXR2QvmLoa7aA==
o1_aslfrsr_score
f5745466 Location:	Variable Format: character Notes: UNF:6:Oum62kDKkfK8+EfLMgnHIA==
o1_alsfrsr_month
f5745466 Location:	Variable Format: character Notes: UNF:6:V5m9QhVK2lwSLYYqKGd2Kg==
o2_alsfrsr_year
f5745466 Location:	Summary Statistics: Valid 82.0; Max. 2020.0; Min. 2019.0; StDev 0.4810469862195563; Mean 2019.6463414634147 Variable Format: numeric Notes: UNF:6:f7LI/KNuKlYsP/8tqyM4kg==
o1_alsfrsr_dk
f5745466 Location:	Variable Format: character Notes: UNF:6:3kv8i5t5U0QXzYjBQZL8Fg==
o1_alsfrsr_pnta
f5745466 Location:	Variable Format: character Notes: UNF:6:H8f8SFCVpqJk6R6ZqLzp+Q==
o2_vc_indication
f5745466 Location:	Variable Format: character Notes: UNF:6:Usbh2xUqtfxr7AHTylSCHw==
o2_vc_percent
f5745466 Location:	Variable Format: character Notes: UNF:6:r7pbpBPxOsdL0tdK7h7HLQ==
o2_vc_month
f5745466 Location:	Variable Format: character Notes: UNF:6:7gXo1zBGoqxQyFM3PjZSog==
o2_vc_year
f5745466 Location:	Variable Format: character Notes: UNF:6:rhmwO0mJHznqsYPq9iHTkA==
o2_vc_dk
f5745466 Location:	Variable Format: character Notes: UNF:6:4txBhYJD3qv+F2Eb8QToQg==
o2_vc_pnta
f5745466 Location:	Variable Format: character Notes: UNF:6:ZNzybbbzD4yYj7TNt/lJMg==
q1_passed
f5745466 Location:	Variable Format: character Notes: UNF:6:joiZG/QTytPC0y7n3WDp3w==
q2_access_pals
f5745466 Location:	Variable Format: character Notes: UNF:6:rC5la4ITY6XhVCA+OdafGg==
q2_access_cg
f5745466 Location:	Variable Format: character Notes: UNF:6:uAzq9c1AwcwTpShhZ3qKcA==
q3_know_insurance_cg
f5745466 Location:	Variable Format: character Notes: UNF:6:+uRcJlL2jgmSNIj4jXGWQQ==
q4_know_expense_cg
f5745466 Location:	Variable Format: character Notes: UNF:6:Jkyb0eH4aKjyi++1kpi4aw==
q5_medicare
f5745466 Location:	Variable Format: character Notes: UNF:6:tG23rXDmFex3pmt89XJrOQ==
q5_va_insur
f5745466 Location:	Variable Format: character Notes: UNF:6:FLKZCHz7KS/gET5f8zhKWg==
q5_tricare
f5745466 Location:	Variable Format: character Notes: UNF:6:9LhZECbw+27Oira6baZhtw==
q5_medicaid
f5745466 Location:	Variable Format: character Notes: UNF:6:KX2sB7Q7f5cWmHbrfhGrXg==
q5_empl_insur
f5745466 Location:	Variable Format: character Notes: UNF:6:KhP4jhpxdJfJS7U12DgLQQ==
q5_private_insur
f5745466 Location:	Variable Format: character Notes: UNF:6:QKy6F9SWbX64I0cG4oHSjA==
q5_no_insur
f5745466 Location:	Variable Format: character Notes: UNF:6:ciB203CvFf8ww68vXfitmg==
q5_insur_dk
f5745466 Location:	Variable Format: character Notes: UNF:6:3Z1birgh4bDBT25Igo9PUA==
q5_other_insur
f5745466 Location:	Variable Format: character Notes: UNF:6:P8vXvB5D+99+ZU5/KzmTcA==
q5_other_insur_oe
f5745466 Location:	Variable Format: character Notes: UNF:6:+FWMlhLO7sLV/frHxs1o2Q==
q6_medadv
f5745466 Location:	Variable Format: character Notes: UNF:6:EFvFwQEZ7xEu6/PZqB6nZg==
q6_medfee
f5745466 Location:	Variable Format: character Notes: UNF:6:vH5EJqVU7EBNUbSKjpZpTQ==
q6_medd
f5745466 Location:	Variable Format: character Notes: UNF:6:EPr0Lghccf3s3UC6YBWLVQ==
q6_medsupp
f5745466 Location:	Variable Format: character Notes: UNF:6:of+OV3lskNqS6qmolZhWmQ==
q6_med_dk
f5745466 Location:	Variable Format: character Notes: UNF:6:Dxe8/GWgPUlz7LdswQUQrw==
q7_va_primsec
f5745466 Location:	Variable Format: character Notes: UNF:6:+G4IweejAZ2w+NLXIbAbcg==
q7_tricare_primsec
f5745466 Location:	Variable Format: character Notes: UNF:6:EolrZIJb/vLbuKDSfbMMMw==
q7_medicaid_primsec
f5745466 Location:	Variable Format: character Notes: UNF:6:lvWYZDxugJBblSpTBulUew==
q7_empl_primsec
f5745466 Location:	Variable Format: character Notes: UNF:6:Zndt7+z48K0jBvPRdivmcw==
q7_priv_primsec
f5745466 Location:	Variable Format: character Notes: UNF:6:azQLU1VejuGv/DwKGZBhpA==
q7_other_primsec
f5745466 Location:	Variable Format: character Notes: UNF:6:Cyx+A3sgzrARlcn1ERqCtg==
q8_ssdi
f5745466 Location:	Variable Format: character Notes: UNF:6:w8BDMl/2rDy+jbtoJypFOw==
q9a_name_va
f5745466 Location:	Variable Format: character Notes: UNF:6:judSLvpGh7jk8Kh8AKBbUg==
q9a_name_va_dk
f5745466 Location:	Variable Format: character Notes: UNF:6:DNhbQeaFK7mrWbTBnQo8ww==
q9a_name_va_pnta
f5745466 Location:	Summary Statistics: StDev NaN; Mean NaN; Valid 0.0; Min. NaN; Max. NaN Variable Format: numeric Notes: UNF:6:zK3ypEp8BsN5HR5fAPoV4w==
q9a_name_tricare
f5745466 Location:	Variable Format: character Notes: UNF:6:vsMYrM403cKsH9x/NbyPFA==
q9a_name_tricare_dk
f5745466 Location:	Summary Statistics: Min. NaN; Valid 0.0; Mean NaN; StDev NaN; Max. NaN; Variable Format: numeric Notes: UNF:6:zK3ypEp8BsN5HR5fAPoV4w==
q9a_name_tricare_pnta
f5745466 Location:	Summary Statistics: Mean NaN; Valid 0.0; Min. NaN; Max. NaN; StDev NaN Variable Format: numeric Notes: UNF:6:zK3ypEp8BsN5HR5fAPoV4w==
q9a_name_empl
f5745466 Location:	Variable Format: character Notes: UNF:6:yVbHbIJU4a9EXgh77QhVGg==
q9a_name_empl_dk
f5745466 Location:	Variable Format: character Notes: UNF:6:Zuys7k5JN32TFiviRkaDkA==
q9a_name_empl_pnta
f5745466 Location:	Variable Format: character Notes: UNF:6:YSifeNfYMIN66okDIJ43GA==
q9a_name_priv
f5745466 Location:	Variable Format: character Notes: UNF:6:BBs0nsfX9llW/GARqemOzw==
q9a_name_priv_dk
f5745466 Location:	Variable Format: character Notes: UNF:6:btpN1iID8xIjU6IfyP3eog==
q9a_name_priv_pnta
f5745466 Location:	Variable Format: character Notes: UNF:6:Ij3z9kWHwQWTPdIEGDLj6Q==
q9a_name_other
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q9e2_prem_freq_medfee
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q9e2_prem_freq_medsupp
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q9f_deduct_other_dk
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q9f_deduct_medd
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q9f_deduct_medsupp
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q9g_max_priv_dk
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q9g_max_other
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q9g_max_other_dk
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q10_respiratory
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q10_comm_device
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q10_home_mod
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q10_vehicle
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q10_gene
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q10_supplies
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q10_other
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q10_other_oe
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q10_pnta
f5745466 Location:	Variable Format: character Notes: UNF:6:lyLeribwjMMw8sVdIddAdQ==
q10_other_fill_in
f5745466 Location:	Variable Format: character Notes: UNF:6:arxJQAL/bXH+3gh8IPNtWA==
q11_pay_wheelchair
f5745466 Location:	Variable Format: character Notes: UNF:6:hqGi70zxPsXb1HIIYMlGnw==
q11_pay_resiratory
f5745466 Location:	Variable Format: character Notes: UNF:6:nWkMBv582kjB+lwz8pOnaA==
q11_pay_comm_device
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q11_pay_home_mod
f5745466 Location:	Variable Format: character Notes: UNF:6:l03xX1LWkVst3cTYZPa4bg==
q11_pay_vehicle
f5745466 Location:	Variable Format: character Notes: UNF:6:mt0InRxLvbsmWsPh3TFtlg==
q11_pay_gene
f5745466 Location:	Variable Format: character Notes: UNF:6:xRRRwxMatX9wNWjHCpBtzw==
q11_pay_supplies
f5745466 Location:	Variable Format: character Notes: UNF:6:Rtt/951AsNmEvFFV2B5HCw==
q11_pay_other
f5745466 Location:	Variable Format: character Notes: UNF:6:DqvWKr+o43hWssI9hbKHBw==
q12_cost_wheelchair

Document Description

Citation

Title:

ALS Focus Wave 1 - Insurance Needs and Financial Burdens Survey

Identification Number:

doi:10.7910/DVN/J9TLXT

Distributor:

Harvard Dataverse

Date of Distribution:

2021-03-18

Version:

Bibliographic Citation:

The ALS Association, 2021, "ALS Focus Wave 1 - Insurance Needs and Financial Burdens Survey", https://doi.org/10.7910/DVN/J9TLXT, Harvard Dataverse, V2, UNF:6:WPfeqPPGCzCXc0z3zFFllQ== [fileUNF]

Study Description

Citation

Title:

ALS Focus Wave 1 - Insurance Needs and Financial Burdens Survey

Identification Number:

doi:10.7910/DVN/J9TLXT

Authoring Entity:

The ALS Association

Other identifications and acknowledgements:

The ALS Association

Other identifications and acknowledgements:

Neurological Clinical Research Institute, Massachusetts General Hospital

Producer:

The ALS Association

Distributor:

Harvard Dataverse

Access Authority:

Sherman, Alexander

Depositor:

Sherman, Alexander

Date of Deposit:

2021-03-09

Holdings Information:

https://doi.org/10.7910/DVN/J9TLXT

Study Scope

Keywords:

Medicine, Health and Life Sciences, Medicine, Health and Life Sciences, ALS, Survey, Focus, Insurance, Financial, Costs, Stress

Abstract:

This NeuroVERSE record contains two files: <ol> <li>ALSFocus_Wave1_Public.csv – This data file contains responses from both the Demographics survey and the survey on Insurance Needs and Financial Burdens, which were fielded in Wave 1 of ALS Focus. This file includes responses collected from February 13, 2020 through April 3, 2020, the launch date and close date of Wave 1, respectively. The file uses a ‘flattened’ format with one record per subject. Variables are organized across the columns with variable names corresponding to the data dictionary. <ul> <li>Subject_ID 199 is a test case and has been removed from the data file as of January 5, 2022.</li> </ul> </li> <li>Wave 1_Data Dictionary_Public.xlsx – This file is the data dictionary for surveys fielded in ALS Focus Wave 1, including the Demographics survey and the survey on Insurance Needs and Financial Burdens. </li> </ol>

Date of Collection:

2020-02-13-2020-04-03

Methodology and Processing

Sources Statement

Data Access

Restrictions:

The Amyotrophic Lateral Sclerosis Association (“The Association”) grants a non-exclusive, non-assignable, non-transferable, royalty free license to use Data for educational and research analyses purposes (“Secondary Analyses”). Data shall not be used for any purpose other than Secondary Analyses. Data Requestor shall not disclose, release, sell, rent, lease, loan, or otherwise grant access to Data to any third party without the prior written consent of The Association. You acknowledge the importance of data privacy of individuals to whom accessed Data may relate, and, accordingly, commit to comply with all applicable data privacy protection laws, not to attempt to identify subjects, and not to combine accessed Data with other sources of data that would lead to the deliberate identification of any individual..

Access Authority:

Sarah Parvanta ALSFocus@alsa-national.org 202-464-8847

Citation Requirement:

The Association must be acknowledged as the source of Data in all written, visual, or oral public disclosures concerning Your research using Data, and a link to the Direct Object Identifier (DOI) must be included in all written disclosures concerning Your research using Data. Additionally, You are permitted to disclose Data to a journal publication that will be publishing or disseminating discoveries derived from Data as long as a link to the DOI is included in the written discoveries. See the data citation, generated by the Dataverse.

Disclaimer:

The Association reserves the right to withhold, remove, and/or discard Data from the Dataverse without notice to You. Except to the extent prohibited by law, You assume all liability for damages which may arise from Your use, storage, disclosure, or disposal of Data. The Association will not be liable to You for any loss, claim, or demand You make, or made against You by any other party, due to or arising from the use of Data by You, except to the extent permitted by law when caused by the gross negligence or willful misconduct of The Association.

Notes:

DATA SHARING TERMS These Data Sharing Terms ("Terms") are effective as of the date of Your acceptance ("Effective Date") and are between you ("You" or "Your") and The Amyotrophic Lateral Sclerosis Association ("The Association"), which specifically states the license terms, liability, limitations and warranty relating to Your use of the ALS Focus Data and corresponding Data Dictionary ("Data"). I. Limited Rights of Use and Restrictions a.   By accepting these Terms, The Association grants You a non-exclusive, non-assignable, non-transferable, royalty free license to use Data for educational and research analyses purposes ("Secondary Analyses"). You agree that all rights, titles, and interests relating to Data belong to The Association, or to the owner of Data you use. Furthermore, you agree that you do not assert any title or interest in Data other than the rights and license granted in these Terms. b.   You agree that you do not have any rights to copyright, rights to trademark ownership or patents, or any other rights or licenses that belong either to The Association, or to the owner of Data, other than those given in these Terms. c.   Data shall not be used for any purpose other than Secondary Analyses. You acknowledge the importance of data privacy of individuals to whom accessed Data may relate, and, accordingly, commit to comply with all applicable data privacy protection laws, not to attempt to identify subjects, and not to combine accessed Data with other sources of data that would lead to the deliberate identification of any individual. d.   Except as set forth in Section III.a., You agree that You will be the only one to retain control over Data and shall not disclose, release, sell, rent, lease, loan, or otherwise grant access to Data to any third party without the prior written consent of The Association. e.   You agree to use Data in compliance with all applicable laws, rules, and regulations, as well as all professional standards applicable to such research, including the completion of any Institutional Review Board (IRB) or ethics review or approval that may be required. It is Your responsibility to determine whether IRB or ethics review or approval is needed and what laws, rules, regulations, and professional standards apply to You. f.   You shall promptly report to The Association any use or disclosure of Data not provided for by these Terms of which You become aware. g.   You are not authorized in any manner to use The Association's name, logos, web graphics, or trademarks without express written permission from The Association except as permitted under Section III below. II. Termination of these Terms a.   You agree that The Association may terminate these Terms at any time without notice if Data were used by you in violation of any law or of any terms or limitations imposed by these Terms. b.   If these Terms are terminated, the license granted under these Terms will be revoked, and you must either destroy Data or return to The Association. III. Publication and Citation Requirements a   You are encouraged to publish and disseminate discoveries derived from Data. You must acknowledge The Association as the source of Data in all written, visual, or oral public disclosures concerning Your research using Data and include a link to the Direct Object Identifier (DOI) in all written disclosures concerning Your research using Data. Additionally, You are permitted to disclose Data to a journal publication that will be publishing or disseminating discoveries derived from Data as long as a link to the DOI is included in the written discoveries. See the data citation, generated by the Dataverse. IV. Acceptance of Risk YOU AGREE THAT USING DATA IS ENTIRELY AT YOUR OWN RISK. DATA ARE PROVIDED "AS IS" WITHOUT ANY WARRANTY OR FITNESS FOR ANY PURPOSE WHATSOEVER, EITHER EXPRESSLY OR IMPLIED OR THAT THE USE OF DATA WILL NOT INFRINGE ANY PATENT, COPYRIGHT, TRADEMARK, OR OTHER PROPRIETARY RIGHTS. THE ASSOCIATION DISCLAIMS ALL AND ANY RESPONSIBILITY FOR WARRANTY OR FITNESS FOR A PARTICULAR PURPOSE. YOU AGREE AND UNDERSTAND THAT DATA MAY CONTAIN ERRORS, OMISSIONS AND/OR INACCURACIES. NOTWITHSTANDING, THE ASSOCIATION, TO THE BEST OF ITS KNOWLEDGE AND BELIEF, HAS THE RIGHT AND AUTHORITY TO PROVIDE DATA TO YOU FOR SECONDARY ANALYSES. V. Indemnity You agree to indemnify, defend and hold blameless The Association, its officers, directors, employees, agents, successors, assigns, contractors, and grantees (the "Association Indemnitees") against any and all damages or loss incurred by you, including without limitation any legal fees, as a result of or in connection with Your use of Data.

TERMS OF ACCESS When you download a file: The ALS Association and Harvard Dataverse administrators collects your personal information, specifically name, email address, institution, and position. How we use this information: The ALS Association and Harvard Dataverse administrators use the information you provide to fulfill online requests, understand which research fields are utilizing ALS Focus data, follow publications, reports, and presentations that use ALS Focus data, or in other ways as allowed by law. We may use your information: <ul> <li>To respond to your requests</li> <li>To communicate changes to our terms of use</li> </ul> Access to your information: Only those who need the provided information to perform a specific task have access to your information. These are authorized members of The ALS Association and Harvard Dataverse administrators. The ALS Association keeps personal information on file, but does not share, sell, license or transmit this information to third parties or external vendors unless required to do so by legal, judicial or governmental proceedings.

Other Study Description Materials

File Description--f5745466

File: ALSFocus_Wave1_Public.tab

Number of cases: 529
No. of variables per record: 382
Type of File: text/tab-separated-values

Notes:

UNF:6:S6UD5mVYy2MbkFdqh7qoGw==

File Description--f4441016

File: Wave 1_Data Dictionary_Public.tab

Number of cases: 1044
No. of variables per record: 11
Type of File: text/tab-separated-values

Notes:

UNF:6:fomR0BBqFk6fIpV2EomhqQ==

Variable Description

List of Variables:

subject_id - subject_id
neurostamp - neurostamp
group - group
s2_icf_us - s2_icf_us
cf2_consent_to_study - cf2_consent_to_study
cf1_agree_to_study - cf1_agree_to_study
demo_start_dt - demo_start_dt
ins_needs_start_dt - ins_needs_start_dt
demo_completion_dt - demo_completion_dt
ins_needs_completion_dt - ins_needs_completion_dt
d1_age - d1_age
d2_gender - d2_gender
d3_sex_at_birth - d3_sex_at_birth
d4_ethnicity - d4_ethnicity
d5_race_americanindian_alaskanat - d5_race_americanindian_alaskanat
d5_race_asian - d5_race_asian
d5_race_black - d5_race_black
d5_race_nativehawaiian_pacificis - d5_race_nativehawaiian_pacificis
d5_race_white - d5_race_white
d5_race_pnta - d5_race_pnta
d6_veteran - d6_veteran
d7_education - d7_education
d8_language - d8_language
d9_state - d9_state
d9_urbanicity - d9_urbanicity
d10_marital_status - d10_marital_status
p1_als_type - p1_als_type
p2_genetic_testing - p2_genetic_testing
p3_1st_symp_location - p3_1st_symp_location
p4_onset_month - p4_onset_month
p4_onset_year - p4_onset_year
p4_pnta - p4_pnta
p4_dk - p4_dk
p4_onset_date - p4_onset_date
p5_diagnosis_month - p5_diagnosis_month
p5_diagnosis_year - p5_diagnosis_year
p5_pnta - p5_pnta
p5_dk - p5_dk
p5_diagnosis_date - p5_diagnosis_date
p6_inc_pre_diagnosis - p6_inc_pre_diagnosis
p7_inc_current - p7_inc_current
p8_employ_pre_diagnosis - p8_employ_pre_diagnosis
p8_employ_pre_diagnosis_oe - p8_employ_pre_diagnosis_oe
p9_employ_current - p9_employ_current
p9_employ_current_oe - p9_employ_current_oe
p10_1_no_care - p10_1_no_care
p10_2_care_visit - p10_2_care_visit
p10_3_share_home - p10_3_share_home
p10_4_facility - p10_4_facility
p10_5_pnta - p10_5_pnta
p10_6_other - p10_6_other
p10_living_oe - p10_living_oe
p11_multi_clinic - p11_multi_clinic
p12_clinic_commute - p12_clinic_commute
p13_medicare - p13_medicare
p13_va_insur - p13_va_insur
p13_tricare - p13_tricare
p13_medicaid - p13_medicaid
p13_empl_insur - p13_empl_insur
p13_private_insur - p13_private_insur
p13_tribal - p13_tribal
p13_no_insur - p13_no_insur
p13_insur_dk - p13_insur_dk
p13_other_insur - p13_other_insur
p13_other_insur_oe - p13_other_insur_oe
c0_professional_cg - c0_professional_cg
c1_employ_current_cg - c1_employ_current_cg
c1_employ_current_cg_oe - c1_employ_current_cg_oe
c2_living_cg - c2_living_cg
c2_living_cg_oe - c2_living_cg_oe
c3_inc_current_cg - c3_inc_current_cg
c4_last_provide_care_cg - c4_last_provide_care_cg
o1_aslfrsr_score - o1_aslfrsr_score
o1_alsfrsr_month - o1_alsfrsr_month
o2_alsfrsr_year - o2_alsfrsr_year
o1_alsfrsr_dk - o1_alsfrsr_dk
o1_alsfrsr_pnta - o1_alsfrsr_pnta
o2_vc_indication - o2_vc_indication
o2_vc_percent - o2_vc_percent
o2_vc_month - o2_vc_month
o2_vc_year - o2_vc_year
o2_vc_dk - o2_vc_dk
o2_vc_pnta - o2_vc_pnta
q1_passed - q1_passed
q2_access_pals - q2_access_pals
q2_access_cg - q2_access_cg
q3_know_insurance_cg - q3_know_insurance_cg
q4_know_expense_cg - q4_know_expense_cg
q5_medicare - q5_medicare
q5_va_insur - q5_va_insur
q5_tricare - q5_tricare
q5_medicaid - q5_medicaid
q5_empl_insur - q5_empl_insur
q5_private_insur - q5_private_insur
q5_no_insur - q5_no_insur
q5_insur_dk - q5_insur_dk
q5_other_insur - q5_other_insur
q5_other_insur_oe - q5_other_insur_oe
q6_medadv - q6_medadv
q6_medfee - q6_medfee
q6_medd - q6_medd
q6_medsupp - q6_medsupp
q6_med_dk - q6_med_dk
q7_va_primsec - q7_va_primsec
q7_tricare_primsec - q7_tricare_primsec
q7_medicaid_primsec - q7_medicaid_primsec
q7_empl_primsec - q7_empl_primsec
q7_priv_primsec - q7_priv_primsec
q7_other_primsec - q7_other_primsec
q8_ssdi - q8_ssdi
q9a_name_va - q9a_name_va
q9a_name_va_dk - q9a_name_va_dk
q9a_name_va_pnta - q9a_name_va_pnta
q9a_name_tricare - q9a_name_tricare
q9a_name_tricare_dk - q9a_name_tricare_dk
q9a_name_tricare_pnta - q9a_name_tricare_pnta
q9a_name_empl - q9a_name_empl
q9a_name_empl_dk - q9a_name_empl_dk
q9a_name_empl_pnta - q9a_name_empl_pnta
q9a_name_priv - q9a_name_priv
q9a_name_priv_dk - q9a_name_priv_dk
q9a_name_priv_pnta - q9a_name_priv_pnta
q9a_name_other - q9a_name_other
q9a_name_other_dk - q9a_name_other_dk
q9a_name_other_pnta - q9a_name_other_pnta
q9a_name_medd - q9a_name_medd
q9a_name_medd_dk - q9a_name_medd_dk
q9a_name_medd_pnta - q9a_name_medd_pnta
q9a_name_medsupp - q9a_name_medsupp
q9a_name_medsupp_dk - q9a_name_medsupp_dk
q9a_name_medsupp_pnta - q9a_name_medsupp_pnta
q9a_name_medadv - q9a_name_medadv
q9a_name_medadv_dk - q9a_name_medadv_dk
q9a_name_medadv_pnta - q9a_name_medadv_pnta
q9b_policy_va - q9b_policy_va
q9b_policy_tricare - q9b_policy_tricare
q9b_policy_empl - q9b_policy_empl
q9b_policy_priv - q9b_policy_priv
q9b_policy_other - q9b_policy_other
q9c_related_va - q9c_related_va
q9c_related_tricare - q9c_related_tricare
q9c_related_empl - q9c_related_empl
q9c_related_priv - q9c_related_priv
q9c_related_other - q9c_related_other
q9d_family_va - q9d_family_va
q9d_family_tricare - q9d_family_tricare
q9d_family_empl - q9d_family_empl
q9d_family_priv - q9d_family_priv
q9d_family_other - q9d_family_other
q9e1_prem_va - q9e1_prem_va
q9e1_prem_va_dk - q9e1_prem_va_dk
q9e2_prem_freq_va - q9e2_prem_freq_va
q9e1_prem_tricare - q9e1_prem_tricare
q9e1_prem_tricare_dk - q9e1_prem_tricare_dk
q9e2_prem_freq_tricare - q9e2_prem_freq_tricare
q9e1_prem_empl - q9e1_prem_empl
q9e1_prem_empl_dk - q9e1_prem_empl_dk
q9e2_prem_freq_empl - q9e2_prem_freq_empl
q9e1_prem_priv - q9e1_prem_priv
q9e1_prem_priv_dk - q9e1_prem_priv_dk
q9e2_prem_freq_priv - q9e2_prem_freq_priv
q9e1_prem_other - q9e1_prem_other
q9e1_prem_other_dk - q9e1_prem_other_dk
q9e2_prem_freq_other - q9e2_prem_freq_other
q9e1_prem_medfee - q9e1_prem_medfee
q9e1_prem_medfee_dk - q9e1_prem_medfee_dk
q9e2_prem_freq_medfee - q9e2_prem_freq_medfee
q9e1_prem_medd - q9e1_prem_medd
q9e1_prem_medd_dk - q9e1_prem_medd_dk
q9e2_prem_freq_medd - q9e2_prem_freq_medd
q9e1_prem_medsupp - q9e1_prem_medsupp
q9e1_prem_medsupp_dk - q9e1_prem_medsupp_dk
q9e2_prem_freq_medsupp - q9e2_prem_freq_medsupp
q9e1_prem_medadv - q9e1_prem_medadv
q9e1_prem_medadv_dk - q9e1_prem_medadv_dk
q9e2_premfreq_medadv - q9e2_premfreq_medadv
q9f_deduct_va - q9f_deduct_va
q9f_deduct_va_dk - q9f_deduct_va_dk
q9f_deduct_tricare - q9f_deduct_tricare
q9f_deduct_tricare_dk - q9f_deduct_tricare_dk
q9f_deduct_empl - q9f_deduct_empl
q9f_deduct_empl_dk - q9f_deduct_empl_dk
q9f_deduct_priv - q9f_deduct_priv
q9f_deduct_priv_dk - q9f_deduct_priv_dk
q9f_deduct_other - q9f_deduct_other
q9f_deduct_other_dk - q9f_deduct_other_dk
q9f_deduct_medd - q9f_deduct_medd
q9f_deduct_medd_dk - q9f_deduct_medd_dk
q9f_deduct_medsupp - q9f_deduct_medsupp
q9f_deduct_medsupp_dk - q9f_deduct_medsupp_dk
q9f_deduct_medadv - q9f_deduct_medadv
q9f_deduct_medadv_dk - q9f_deduct_medadv_dk
q9g_max_va - q9g_max_va
q9g_max_va_dk - q9g_max_va_dk
q9g_max_tricare - q9g_max_tricare
q9g_max_tricare_dk - q9g_max_tricare_dk
q9g_max_empl - q9g_max_empl
q9g_max_empl_dk - q9g_max_empl_dk
q9g_max_priv - q9g_max_priv
q9g_max_priv_dk - q9g_max_priv_dk
q9g_max_other - q9g_max_other
q9g_max_other_dk - q9g_max_other_dk
q9g_max_medd - q9g_max_medd
q9g_max_medd_dk - q9g_max_medd_dk
q9g_max_medsupp - q9g_max_medsupp
q9g_max_medsupp_dk - q9g_max_medsupp_dk
q9g_max_medadv - q9g_max_medadv
q9g_max_medadv_dk - q9g_max_medadv_dk
q10_wheelchair - q10_wheelchair
q10_respiratory - q10_respiratory
q10_comm_device - q10_comm_device
q10_home_mod - q10_home_mod
q10_vehicle - q10_vehicle
q10_gene - q10_gene
q10_supplies - q10_supplies
q10_other - q10_other
q10_other_oe - q10_other_oe
q10_pnta - q10_pnta
q10_other_fill_in - q10_other_fill_in
q11_pay_wheelchair - q11_pay_wheelchair
q11_pay_resiratory - q11_pay_resiratory
q11_pay_comm_device - q11_pay_comm_device
q11_pay_home_mod - q11_pay_home_mod
q11_pay_vehicle - q11_pay_vehicle
q11_pay_gene - q11_pay_gene
q11_pay_supplies - q11_pay_supplies
q11_pay_other - q11_pay_other
q12_cost_wheelchair - q12_cost_wheelchair
q12_cost_respiratory - q12_cost_respiratory
q12_cost_comm_device - q12_cost_comm_device
q12_cost_home_mod - q12_cost_home_mod
q12_cost_vehicle - q12_cost_vehicle
q12_cost_gene - q12_cost_gene
q12_cost_supplies - q12_cost_supplies
q12_cost_other - q12_cost_other
q13_unable_wheelchair - q13_unable_wheelchair
q13_unable_respiratory - q13_unable_respiratory
q13_unable_comm_device - q13_unable_comm_device
q13_unable_home_mod - q13_unable_home_mod
q13_unable_vehicle - q13_unable_vehicle
q13_unable_gene - q13_unable_gene
q13_unable_supplies - q13_unable_supplies
q13_unable_other - q13_unable_other
q13_unable_pnta - q13_unable_pnta
q13_unable_na - q13_unable_na
q13_unable_fill_in - q13_unable_fill_in
q14_burden_one_time - q14_burden_one_time
q14_burden_one_time_na - q14_burden_one_time_na
q14_burden_one_time_pnta - q14_burden_one_time_pnta
q14_burden_one_time_dk - q14_burden_one_time_dk
q15_drugs - q15_drugs
q15_care - q15_care
q15_activities - q15_activities
q15_allied_health - q15_allied_health
q15_hospital - q15_hospital
q15_clinic - q15_clinic
q15_outpatient - q15_outpatient
q15_assisted_living - q15_assisted_living
q15_supplies - q15_supplies
q15_other - q15_other
q15_other_oe - q15_other_oe
q15_pnta - q15_pnta
q15_na - q15_na
q15_other_fill_in - q15_other_fill_in
q16_pay_drugs - q16_pay_drugs
q16_pay_care - q16_pay_care
q16_pay_activities - q16_pay_activities
q16_pay_allied_health - q16_pay_allied_health
q16_pay_hospital - q16_pay_hospital
q16_pay_clinic - q16_pay_clinic
q16_pay_outpatient - q16_pay_outpatient
q16_pay_assisted_living - q16_pay_assisted_living
q16_pay_supplies - q16_pay_supplies
q16_pay_other - q16_pay_other
q17_cost_drugs - q17_cost_drugs
q17_cost_care - q17_cost_care
q17_cost_activities - q17_cost_activities
q17_cost_allied_health - q17_cost_allied_health
q17_cost_hospital - q17_cost_hospital
q17_cost_clinic - q17_cost_clinic
q17_cost_outpatient - q17_cost_outpatient
q17_cost_assisted_living - q17_cost_assisted_living
q17_cost_supplies - q17_cost_supplies
q17_cost_other - q17_cost_other
q18_unable_drugs - q18_unable_drugs
q18_unable_care - q18_unable_care
q18_unable_activities - q18_unable_activities
q18_unable_allied_health - q18_unable_allied_health
q18_unable_hospital - q18_unable_hospital
q18_unable_clinic - q18_unable_clinic
q18_unable_outpatient - q18_unable_outpatient
q18_unable_assisted_living - q18_unable_assisted_living
q18_unable_supplies - q18_unable_supplies
q18_unable_other - q18_unable_other
q18_unable_pnta - q18_unable_pnta
q18_unable_na - q18_unable_na
q18_unable_fill_in - q18_unable_fill_in
q19_burden_recur - q19_burden_recur
q19_burden_recur_na - q19_burden_recur_na
q19_burden_recur_pnta - q19_burden_recur_pnta
q19_burden_recur_dk - q19_burden_recur_dk
q20_va_home - q20_va_home
q20_va_vehicle - q20_va_vehicle
q20_va_wheelchair - q20_va_wheelchair
q20_va_dk - q20_va_dk
q20_va_none - q20_va_none
q21_borrow - q21_borrow
q22_bankrupt - q22_bankrupt
q23_working - q23_working
q24_maintain_insur - q24_maintain_insur
q25_lose_insur - q25_lose_insur
q26_lose_work_insur - q26_lose_work_insur
q27_stop_work_pals - q27_stop_work_pals
q28_stop_work_cg - q28_stop_work_cg
q29_qualify_medicare - q29_qualify_medicare
q29_qualify_medicaid - q29_qualify_medicaid
q29_no_qualify - q29_no_qualify
q29_pnta - q29_pnta
q30_1_treatments - q30_1_treatments
q30_1_treatments_na - q30_1_treatments_na
q30_2_services - q30_2_services
q30_2_services_na - q30_2_services_na
q30_3_devices - q30_3_devices
q30_3_devices_na - q30_3_devices_na
q30_4_understand - q30_4_understand
q30_4_understand_na - q30_4_understand_na
q30_5_paperwork - q30_5_paperwork
q30_5_paperwork_na - q30_5_paperwork_na
q30_6_bill_disputes - q30_6_bill_disputes
q30_6_bill_disputes_na - q30_6_bill_disputes_na
q30_7_appeals - q30_7_appeals
q30_7_appeals_na - q30_7_appeals_na
q30_8_collectors - q30_8_collectors
q30_8_collectors_na - q30_8_collectors_na
q9e1_prem_empl_new2 - q9e1_prem_empl_new2
q9e1_prem_medadv_new2 - q9e1_prem_medadv_new2
q9e1_prem_medd_new2 - q9e1_prem_medd_new2
q9e1_prem_medfee_new2 - q9e1_prem_medfee_new2
q9e1_prem_medsupp_new2 - q9e1_prem_medsupp_new2
q9e1_prem_other_new2 - q9e1_prem_other_new2
q9e1_prem_priv_new2 - q9e1_prem_priv_new2
q9e1_prem_tricare_new2 - q9e1_prem_tricare_new2
q9e2empl_new2 - q9e2empl_new2
q9e2medadv_new2 - q9e2medadv_new2
q9e2medd_new2 - q9e2medd_new2
q9e2medfee_new2 - q9e2medfee_new2
q9e2medsupp_new2 - q9e2medsupp_new2
q9e2oth_new2 - q9e2oth_new2
q9e2priv_new2 - q9e2priv_new2
q9e2tricare_new2 - q9e2tricare_new2
q9f_deduct_empl_new2 - q9f_deduct_empl_new2
q9f_deduct_medadv_new2 - q9f_deduct_medadv_new2
q9f_deduct_medd_new2 - q9f_deduct_medd_new2
q9f_deduct_medsupp_new2 - q9f_deduct_medsupp_new2
q9f_deduct_other_new2 - q9f_deduct_other_new2
q9f_deduct_priv_new2 - q9f_deduct_priv_new2
q9f_deduct_tricare_new2 - q9f_deduct_tricare_new2
q9g_max_empl_new2 - q9g_max_empl_new2
q9g_max_medadv_new2 - q9g_max_medadv_new2
q9g_max_medd_new2 - q9g_max_medd_new2
q9g_max_medsupp_new2 - q9g_max_medsupp_new2
q9g_max_other_new2 - q9g_max_other_new2
q9g_max_priv_new2 - q9g_max_priv_new2
q9g_max_tricare_new2 - q9g_max_tricare_new2
q12_cost_comm_device_new2 - q12_cost_comm_device_new2
q12_cost_gene_new2 - q12_cost_gene_new2
q12_cost_home_mod_new2 - q12_cost_home_mod_new2
q12_cost_respiratory_new2 - q12_cost_respiratory_new2
q12_cost_vehicle_new2 - q12_cost_vehicle_new2
q12_cost_wheelchair_new2 - q12_cost_wheelchair_new2
q12_cost_supplies_new2 - q12_cost_supplies_new2
q12_cost_other_new2 - q12_cost_other_new2
q17_cost_activities_new2 - q17_cost_activities_new2
q17_cost_allied_health_new2 - q17_cost_allied_health_new2
q17_cost_assisted_living_new2 - q17_cost_assisted_living_new2
q17_cost_care_new2 - q17_cost_care_new2
q17_cost_clinic_new2 - q17_cost_clinic_new2
q17_cost_drugs_new2 - q17_cost_drugs_new2
q17_cost_hospital_new2 - q17_cost_hospital_new2
q17_cost_outpatient_new2 - q17_cost_outpatient_new2
q17_cost_supplies_new2 - q17_cost_supplies_new2
q17_cost_other_new2 - q17_cost_other_new2
VariableName - VariableName
QuestionNumber - QuestionNumber
ALSFocusSurvey(Wave1) - ALSFocusSurvey(Wave1)
QuestionDescription - QuestionDescription
QuestionforPersonwithALS - QuestionforPersonwithALS
QuestionforCurrentCaregiver - QuestionforCurrentCaregiver
QuestionforPastCaregiver - QuestionforPastCaregiver
VariableLabel - VariableLabel
ResponseOptions - ResponseOptions
Value - Value
ValueLabel - ValueLabel

Variables

subject_id

f5745466 Location:

Summary Statistics: Max. 734.0; Mean 360.1058601134221; Min. 5.0; StDev 214.75346185445494; Valid 529.0;

Variable Format: numeric

Notes: UNF:6:wGdX/ozN9zgKkDuy+vJ95A==

neurostamp

f5745466 Location:

Variable Format: character

Notes: UNF:6:U66d4CNZvTlmqs1EzqXbrA==

group

f5745466 Location:

Variable Format: character

Notes: UNF:6:5gpdJp1TKMpDpeiPzxwRmw==

s2_icf_us

f5745466 Location:

Variable Format: character

Notes: UNF:6:yVYcOBinNE9m9Yo9dzsTRA==

cf2_consent_to_study

f5745466 Location:

Variable Format: character

Notes: UNF:6:yVYcOBinNE9m9Yo9dzsTRA==

cf1_agree_to_study

f5745466 Location:

Variable Format: character

Notes: UNF:6:yVYcOBinNE9m9Yo9dzsTRA==

demo_start_dt

f5745466 Location:

Variable Format: character

Notes: UNF:6:O5J2iVZvStxN46FXLr75Tw==

ins_needs_start_dt

f5745466 Location:

Variable Format: character

Notes: UNF:6:O5J2iVZvStxN46FXLr75Tw==

demo_completion_dt

f5745466 Location:

Variable Format: character

Notes: UNF:6:PWqDghYWhVYiBtBaySRn0A==

ins_needs_completion_dt

f5745466 Location:

Variable Format: character

Notes: UNF:6:6jJUUEggpxW9SXHl2eYaYg==

d1_age

f5745466 Location:

Variable Format: character

Notes: UNF:6:qttNEMuChI+FThDNulXU4A==

d2_gender

f5745466 Location:

Variable Format: character

Notes: UNF:6:RKec+VWXIgHUPNuDotVY2Q==

d3_sex_at_birth

f5745466 Location:

Variable Format: character

Notes: UNF:6:5FroQWbypiIrOLTLL5Y4LA==

d4_ethnicity

f5745466 Location:

Variable Format: character

Notes: UNF:6:SMQClKedCvhanrSp+lkcmA==

d5_race_americanindian_alaskanat

f5745466 Location:

Variable Format: character

Notes: UNF:6:HfatSnXkjV6BCNSieZVcYQ==

d5_race_asian

f5745466 Location:

Variable Format: character

Notes: UNF:6:nmOV/t0fVrwch5910G+nzQ==

d5_race_black

f5745466 Location:

Variable Format: character

Notes: UNF:6:07/S2qWE32srTAxrXhTZ0g==

d5_race_nativehawaiian_pacificis

f5745466 Location:

Variable Format: character

Notes: UNF:6:yHU3IXOTO5YoTRS2ZCqjPg==

d5_race_white

f5745466 Location:

Variable Format: character

Notes: UNF:6:VBwpYxPoVHy0iVP+yt2d8Q==

d5_race_pnta

f5745466 Location:

Variable Format: character

Notes: UNF:6:NIX94Q0fvIKVrfCvlQLgbw==

d6_veteran

f5745466 Location:

Variable Format: character

Notes: UNF:6:KbXgQj0mo/d998mUtR6hCg==

d7_education

f5745466 Location:

Variable Format: character

Notes: UNF:6:/jjqKrabxfbYyLKQxJohRg==

d8_language

f5745466 Location:

Variable Format: character

Notes: UNF:6:HKEXp6mxGlzDok5lGBG9pA==

d9_state

f5745466 Location:

Variable Format: character

Notes: UNF:6:3Q6kVAJCHRUK3C2RbrRk3A==

d9_urbanicity

f5745466 Location:

Variable Format: character

Notes: UNF:6:mocKQ2vW3MSQgXRPC6F+Kw==

d10_marital_status

f5745466 Location:

Variable Format: character

Notes: UNF:6:PyFp7y14f3bCtFZG9EzfdA==

p1_als_type

f5745466 Location:

Variable Format: character

Notes: UNF:6:BtgJAmS2cYzQPnUMizPlKw==

p2_genetic_testing

f5745466 Location:

Variable Format: character

Notes: UNF:6:2ZH7q1Q9sn7L+JVSF5QJjg==

p3_1st_symp_location

f5745466 Location:

Variable Format: character

Notes: UNF:6:QoAwfK7Lf+JZDiDdVTp8ag==

p4_onset_month

f5745466 Location:

Variable Format: character

Notes: UNF:6:JV+8yKwFYNCOH2rm+ToCPg==

p4_onset_year

f5745466 Location:

Summary Statistics: Mean 2006.0657894736842; StDev 119.93878785986914; Min. 207.0; Valid 228.0; Max. 2020.0

Variable Format: numeric

Notes: UNF:6:dNvm+kBgw9xa6ES3DIIq4Q==

p4_pnta

f5745466 Location:

Variable Format: character

Notes: UNF:6:cYlymZKT73H2j9rMIwvrKQ==

p4_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:73lZj6Ww9oqwQPdAbhKqmw==

p4_onset_date

f5745466 Location:

Variable Format: character

Notes: UNF:6:fbwveH5QnYqRmiqBBqckCQ==

p5_diagnosis_month

f5745466 Location:

Variable Format: character

Notes: UNF:6:Icv3bxmJuFItofEtf/Kl1g==

p5_diagnosis_year

f5745466 Location:

Summary Statistics: StDev 65.42138081817926; Valid 236.0; Min. 1993.0; Max. 3019.0; Mean 2020.385593220339

Variable Format: numeric

Notes: UNF:6:ZQbWtBDDgnpy1ChOrtEFhw==

p5_pnta

f5745466 Location:

Summary Statistics: Min. NaN; Max. NaN; StDev NaN; Valid 0.0; Mean NaN

Variable Format: numeric

Notes: UNF:6:zK3ypEp8BsN5HR5fAPoV4w==

p5_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:7fyglbeJW7kIVdxteYV7iQ==

p5_diagnosis_date

f5745466 Location:

Variable Format: character

Notes: UNF:6:S0uk9lu/XEbyp+T49h4UNg==

p6_inc_pre_diagnosis

f5745466 Location:

Variable Format: character

Notes: UNF:6:ymGq43dcIrNZKfvE1Qq2LA==

p7_inc_current

f5745466 Location:

Variable Format: character

Notes: UNF:6:QP2qSEo3XAmrMfbxz3Mc/g==

p8_employ_pre_diagnosis

f5745466 Location:

Variable Format: character

Notes: UNF:6:zaYLRIVH8XgDVFdjNakMGQ==

p8_employ_pre_diagnosis_oe

f5745466 Location:

Variable Format: character

Notes: UNF:6:98WBBzuhoQ5o8untqNw4OQ==

p9_employ_current

f5745466 Location:

Variable Format: character

Notes: UNF:6:j2+GeO+jkktKN/ePPluPzA==

p9_employ_current_oe

f5745466 Location:

Variable Format: character

Notes: UNF:6:1OofYo3QXR9ZlEEzjOxV6g==

p10_1_no_care

f5745466 Location:

Variable Format: character

Notes: UNF:6:AcFS8LyGmkUXa4fTaO9AlQ==

p10_2_care_visit

f5745466 Location:

Variable Format: character

Notes: UNF:6:O1fmAkwQkroRS2qTSsqLuw==

p10_3_share_home

f5745466 Location:

Variable Format: character

Notes: UNF:6:tmEbSaZXEPvQx/BiVHyriQ==

p10_4_facility

f5745466 Location:

Variable Format: character

Notes: UNF:6:1CZnByzPe5R6Tx1wvLAbZA==

p10_5_pnta

f5745466 Location:

Variable Format: character

Notes: UNF:6:BIQzuzAgxQVB7XBTnBK5Ng==

p10_6_other

f5745466 Location:

Variable Format: character

Notes: UNF:6:mYPwsHKGvXEuL6F7MBXppw==

p10_living_oe

f5745466 Location:

Variable Format: character

Notes: UNF:6:IDnHk8rFLb5lKULnuJWw5A==

p11_multi_clinic

f5745466 Location:

Variable Format: character

Notes: UNF:6:vH4J0HtJuldYzxv0LtQFxQ==

p12_clinic_commute

f5745466 Location:

Variable Format: character

Notes: UNF:6:kT0YoSX8HdSt/jA5q6PrVg==

p13_medicare

f5745466 Location:

Variable Format: character

Notes: UNF:6:MqW3aGM467FbmIybAT4qRA==

p13_va_insur

f5745466 Location:

Variable Format: character

Notes: UNF:6:rjZjjC7RhnSQm6jBlRgzaA==

p13_tricare

f5745466 Location:

Variable Format: character

Notes: UNF:6:CvLFNiIBMvP4g7oepOyQnw==

p13_medicaid

f5745466 Location:

Variable Format: character

Notes: UNF:6:dbq8Q2E3GYUQBli8LfHLCQ==

p13_empl_insur

f5745466 Location:

Variable Format: character

Notes: UNF:6:ICYQmQ59SQwPgJhxmaP6HQ==

p13_private_insur

f5745466 Location:

Variable Format: character

Notes: UNF:6:Q4ixY17ps7GzeimjxI+2dg==

p13_tribal

f5745466 Location:

Variable Format: character

Notes: UNF:6:BIQzuzAgxQVB7XBTnBK5Ng==

p13_no_insur

f5745466 Location:

Variable Format: character

Notes: UNF:6:oW8xcpd/SUIQEfUhvtjvSQ==

p13_insur_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:BIQzuzAgxQVB7XBTnBK5Ng==

p13_other_insur

f5745466 Location:

Variable Format: character

Notes: UNF:6:KVCkqD+wzNTQc6cKyQo5dQ==

p13_other_insur_oe

f5745466 Location:

Variable Format: character

Notes: UNF:6:a71qY9y2bBYiS9yfBQqccw==

c0_professional_cg

f5745466 Location:

Variable Format: character

Notes: UNF:6:d22ee3ikgDoMCdKWaERSpA==

c1_employ_current_cg

f5745466 Location:

Variable Format: character

Notes: UNF:6:daqu42QzWyT3b3xj/V8mfQ==

c1_employ_current_cg_oe

f5745466 Location:

Variable Format: character

Notes: UNF:6:+I6gfiqpFp10+A1pwwRrfg==

c2_living_cg

f5745466 Location:

Variable Format: character

Notes: UNF:6:8swiHoxtu1sfMXmTZm5XNQ==

c2_living_cg_oe

f5745466 Location:

Variable Format: character

Notes: UNF:6:qMIXFePE7IzwgMI+1Wmnxw==

c3_inc_current_cg

f5745466 Location:

Variable Format: character

Notes: UNF:6:59SMPvdbByZGNCmxJVXCSQ==

c4_last_provide_care_cg

f5745466 Location:

Variable Format: character

Notes: UNF:6:pbkRkBxAPhXR2QvmLoa7aA==

o1_aslfrsr_score

f5745466 Location:

Variable Format: character

Notes: UNF:6:Oum62kDKkfK8+EfLMgnHIA==

o1_alsfrsr_month

f5745466 Location:

Variable Format: character

Notes: UNF:6:V5m9QhVK2lwSLYYqKGd2Kg==

o2_alsfrsr_year

f5745466 Location:

Summary Statistics: Valid 82.0; Max. 2020.0; Min. 2019.0; StDev 0.4810469862195563; Mean 2019.6463414634147

Variable Format: numeric

Notes: UNF:6:f7LI/KNuKlYsP/8tqyM4kg==

o1_alsfrsr_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:3kv8i5t5U0QXzYjBQZL8Fg==

o1_alsfrsr_pnta

f5745466 Location:

Variable Format: character

Notes: UNF:6:H8f8SFCVpqJk6R6ZqLzp+Q==

o2_vc_indication

f5745466 Location:

Variable Format: character

Notes: UNF:6:Usbh2xUqtfxr7AHTylSCHw==

o2_vc_percent

f5745466 Location:

Variable Format: character

Notes: UNF:6:r7pbpBPxOsdL0tdK7h7HLQ==

o2_vc_month

f5745466 Location:

Variable Format: character

Notes: UNF:6:7gXo1zBGoqxQyFM3PjZSog==

o2_vc_year

f5745466 Location:

Variable Format: character

Notes: UNF:6:rhmwO0mJHznqsYPq9iHTkA==

o2_vc_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:4txBhYJD3qv+F2Eb8QToQg==

o2_vc_pnta

f5745466 Location:

Variable Format: character

Notes: UNF:6:ZNzybbbzD4yYj7TNt/lJMg==

q1_passed

f5745466 Location:

Variable Format: character

Notes: UNF:6:joiZG/QTytPC0y7n3WDp3w==

q2_access_pals

f5745466 Location:

Variable Format: character

Notes: UNF:6:rC5la4ITY6XhVCA+OdafGg==

q2_access_cg

f5745466 Location:

Variable Format: character

Notes: UNF:6:uAzq9c1AwcwTpShhZ3qKcA==

q3_know_insurance_cg

f5745466 Location:

Variable Format: character

Notes: UNF:6:+uRcJlL2jgmSNIj4jXGWQQ==

q4_know_expense_cg

f5745466 Location:

Variable Format: character

Notes: UNF:6:Jkyb0eH4aKjyi++1kpi4aw==

q5_medicare

f5745466 Location:

Variable Format: character

Notes: UNF:6:tG23rXDmFex3pmt89XJrOQ==

q5_va_insur

f5745466 Location:

Variable Format: character

Notes: UNF:6:FLKZCHz7KS/gET5f8zhKWg==

q5_tricare

f5745466 Location:

Variable Format: character

Notes: UNF:6:9LhZECbw+27Oira6baZhtw==

q5_medicaid

f5745466 Location:

Variable Format: character

Notes: UNF:6:KX2sB7Q7f5cWmHbrfhGrXg==

q5_empl_insur

f5745466 Location:

Variable Format: character

Notes: UNF:6:KhP4jhpxdJfJS7U12DgLQQ==

q5_private_insur

f5745466 Location:

Variable Format: character

Notes: UNF:6:QKy6F9SWbX64I0cG4oHSjA==

q5_no_insur

f5745466 Location:

Variable Format: character

Notes: UNF:6:ciB203CvFf8ww68vXfitmg==

q5_insur_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:3Z1birgh4bDBT25Igo9PUA==

q5_other_insur

f5745466 Location:

Variable Format: character

Notes: UNF:6:P8vXvB5D+99+ZU5/KzmTcA==

q5_other_insur_oe

f5745466 Location:

Variable Format: character

Notes: UNF:6:+FWMlhLO7sLV/frHxs1o2Q==

q6_medadv

f5745466 Location:

Variable Format: character

Notes: UNF:6:EFvFwQEZ7xEu6/PZqB6nZg==

q6_medfee

f5745466 Location:

Variable Format: character

Notes: UNF:6:vH5EJqVU7EBNUbSKjpZpTQ==

q6_medd

f5745466 Location:

Variable Format: character

Notes: UNF:6:EPr0Lghccf3s3UC6YBWLVQ==

q6_medsupp

f5745466 Location:

Variable Format: character

Notes: UNF:6:of+OV3lskNqS6qmolZhWmQ==

q6_med_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:Dxe8/GWgPUlz7LdswQUQrw==

q7_va_primsec

f5745466 Location:

Variable Format: character

Notes: UNF:6:+G4IweejAZ2w+NLXIbAbcg==

q7_tricare_primsec

f5745466 Location:

Variable Format: character

Notes: UNF:6:EolrZIJb/vLbuKDSfbMMMw==

q7_medicaid_primsec

f5745466 Location:

Variable Format: character

Notes: UNF:6:lvWYZDxugJBblSpTBulUew==

q7_empl_primsec

f5745466 Location:

Variable Format: character

Notes: UNF:6:Zndt7+z48K0jBvPRdivmcw==

q7_priv_primsec

f5745466 Location:

Variable Format: character

Notes: UNF:6:azQLU1VejuGv/DwKGZBhpA==

q7_other_primsec

f5745466 Location:

Variable Format: character

Notes: UNF:6:Cyx+A3sgzrARlcn1ERqCtg==

q8_ssdi

f5745466 Location:

Variable Format: character

Notes: UNF:6:w8BDMl/2rDy+jbtoJypFOw==

q9a_name_va

f5745466 Location:

Variable Format: character

Notes: UNF:6:judSLvpGh7jk8Kh8AKBbUg==

q9a_name_va_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:DNhbQeaFK7mrWbTBnQo8ww==

q9a_name_va_pnta

f5745466 Location:

Summary Statistics: StDev NaN; Mean NaN; Valid 0.0; Min. NaN; Max. NaN

Variable Format: numeric

Notes: UNF:6:zK3ypEp8BsN5HR5fAPoV4w==

q9a_name_tricare

f5745466 Location:

Variable Format: character

Notes: UNF:6:vsMYrM403cKsH9x/NbyPFA==

q9a_name_tricare_dk

f5745466 Location:

Summary Statistics: Min. NaN; Valid 0.0; Mean NaN; StDev NaN; Max. NaN;

Variable Format: numeric

Notes: UNF:6:zK3ypEp8BsN5HR5fAPoV4w==

q9a_name_tricare_pnta

f5745466 Location:

Summary Statistics: Mean NaN; Valid 0.0; Min. NaN; Max. NaN; StDev NaN

Variable Format: numeric

Notes: UNF:6:zK3ypEp8BsN5HR5fAPoV4w==

q9a_name_empl

f5745466 Location:

Variable Format: character

Notes: UNF:6:yVbHbIJU4a9EXgh77QhVGg==

q9a_name_empl_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:Zuys7k5JN32TFiviRkaDkA==

q9a_name_empl_pnta

f5745466 Location:

Variable Format: character

Notes: UNF:6:YSifeNfYMIN66okDIJ43GA==

q9a_name_priv

f5745466 Location:

Variable Format: character

Notes: UNF:6:BBs0nsfX9llW/GARqemOzw==

q9a_name_priv_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:btpN1iID8xIjU6IfyP3eog==

q9a_name_priv_pnta

f5745466 Location:

Variable Format: character

Notes: UNF:6:Ij3z9kWHwQWTPdIEGDLj6Q==

q9a_name_other

f5745466 Location:

Variable Format: character

Notes: UNF:6:s6YnTcUmeFl7YfcNmXZ/eQ==

q9a_name_other_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:YGHTmnOffNpP1OQh/4ZsQA==

q9a_name_other_pnta

f5745466 Location:

Variable Format: character

Notes: UNF:6:YGHTmnOffNpP1OQh/4ZsQA==

q9a_name_medd

f5745466 Location:

Variable Format: character

Notes: UNF:6:Ozd2IECdg6nfe2zIK1vvTg==

q9a_name_medd_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:hmknwWo2qP8l6ClFU3QV8Q==

q9a_name_medd_pnta

f5745466 Location:

Variable Format: character

Notes: UNF:6:36TG/YNwaJqsYUQRJeSraw==

q9a_name_medsupp

f5745466 Location:

Variable Format: character

Notes: UNF:6:0M67dvmo7C202h+kzjjRPg==

q9a_name_medsupp_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:OOJ6vJrUDMw0O2pVSVT1Xw==

q9a_name_medsupp_pnta

f5745466 Location:

Variable Format: character

Notes: UNF:6:Jn/lRaCH7nO/4ft+mL32uA==

q9a_name_medadv

f5745466 Location:

Variable Format: character

Notes: UNF:6:yqoSjMmq404HHsLqKmnkyQ==

q9a_name_medadv_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:ryWT4sMUz8NtcJDVd4JiuQ==

q9a_name_medadv_pnta

f5745466 Location:

Variable Format: character

Notes: UNF:6:hpWYlXTR4X5DxTKEV/WJAA==

q9b_policy_va

f5745466 Location:

Variable Format: character

Notes: UNF:6:FkLIE31QHGJIvLXkM0yWaQ==

q9b_policy_tricare

f5745466 Location:

Variable Format: character

Notes: UNF:6:Ek8jArCglnRCBbHRVsXfiQ==

q9b_policy_empl

f5745466 Location:

Variable Format: character

Notes: UNF:6:76NvAV1EANiyhrg+UbR2NA==

q9b_policy_priv

f5745466 Location:

Variable Format: character

Notes: UNF:6:jJ0vPXaiNbsqfsVyE7EhEQ==

q9b_policy_other

f5745466 Location:

Variable Format: character

Notes: UNF:6:yXHdnkJDPzqXF+EMPH3DMg==

q9c_related_va

f5745466 Location:

Variable Format: character

Notes: UNF:6:EVDQ4FiBXI4GwcdK8BP2ZA==

q9c_related_tricare

f5745466 Location:

Variable Format: character

Notes: UNF:6:5sHKcRRlc1yZnA9OVjxS0Q==

q9c_related_empl

f5745466 Location:

Variable Format: character

Notes: UNF:6:5twwTqbVmP2IhxJ0I+/xIQ==

q9c_related_priv

f5745466 Location:

Variable Format: character

Notes: UNF:6:Sex5WLGtB3K6+RfsJ6Rp/A==

q9c_related_other

f5745466 Location:

Variable Format: character

Notes: UNF:6:8UCgDe1SFvLjoSa2fAsb/g==

q9d_family_va

f5745466 Location:

Variable Format: character

Notes: UNF:6:6ofauVCYg6IqapdFifKTaA==

q9d_family_tricare

f5745466 Location:

Variable Format: character

Notes: UNF:6:eypGkEvDg4AjKjAuKqVy0w==

q9d_family_empl

f5745466 Location:

Variable Format: character

Notes: UNF:6:aI33L2y0sD7Jce4jX1pBrg==

q9d_family_priv

f5745466 Location:

Variable Format: character

Notes: UNF:6:BsPrixfsedvZ9QHDsEE1PA==

q9d_family_other

f5745466 Location:

Summary Statistics: Max. 2.0; StDev 0.3875533878815898; Min. 1.0; Mean 1.173913043478261; Valid 23.0

Variable Format: numeric

Notes: UNF:6:4SyJMnLZjKDvDmI5qwjiJw==

q9e1_prem_va

f5745466 Location:

Variable Format: character

Notes: UNF:6:/9gY8U8khNXiZh3hZPuI7Q==

q9e1_prem_va_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:qi4Qn7ZJczOIwnbYo9J+Qw==

q9e2_prem_freq_va

f5745466 Location:

Variable Format: character

Notes: UNF:6:1KlXTl55DRVJWU97pHbUTA==

q9e1_prem_tricare

f5745466 Location:

Variable Format: character

Notes: UNF:6:3qok4c3rTA37dpU7nSZEvg==

q9e1_prem_tricare_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:drXClJeauk/COlxOOXxwzw==

q9e2_prem_freq_tricare

f5745466 Location:

Variable Format: character

Notes: UNF:6:yU9xBVQcp4/9bZ+wZeGn8Q==

q9e1_prem_empl

f5745466 Location:

Variable Format: character

Notes: UNF:6:s00RS6jureEf1Uynw5QXlQ==

q9e1_prem_empl_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:pjxFEp2MiL7uu2VBDb81HQ==

q9e2_prem_freq_empl

f5745466 Location:

Variable Format: character

Notes: UNF:6:0HU4R7BIuQooiMQ8gmb04A==

q9e1_prem_priv

f5745466 Location:

Variable Format: character

Notes: UNF:6:vYJ4Rpj2c3G9s4Np2PmeFA==

q9e1_prem_priv_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:IXVbNN0aVZc/USAxTan3CA==

q9e2_prem_freq_priv

f5745466 Location:

Variable Format: character

Notes: UNF:6:ornFWvYcSNQa42PqIZlJ2w==

q9e1_prem_other

f5745466 Location:

Variable Format: character

Notes: UNF:6:UE4sATeDPzMKMOO88iA2rw==

q9e1_prem_other_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:vBymScl08avS2ftt0lLqGw==

q9e2_prem_freq_other

f5745466 Location:

Variable Format: character

Notes: UNF:6:r/n9XkgwKbAqgUZi5Nrbkw==

q9e1_prem_medfee

f5745466 Location:

Variable Format: character

Notes: UNF:6:4V+qGLUZJQtlBAX1nRF6Sg==

q9e1_prem_medfee_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:VleSvBtmuiTSHQF2Mi7fHg==

q9e2_prem_freq_medfee

f5745466 Location:

Variable Format: character

Notes: UNF:6:1u/TcaQTEA60ZiYXfDT6vg==

q9e1_prem_medd

f5745466 Location:

Variable Format: character

Notes: UNF:6:XZCEcFC1uK0ujvHdd6mX8A==

q9e1_prem_medd_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:y/JYs79vQsUU68kKZ6h8YA==

q9e2_prem_freq_medd

f5745466 Location:

Variable Format: character

Notes: UNF:6:YFPBan6bUzm/DmnQouAtvQ==

q9e1_prem_medsupp

f5745466 Location:

Variable Format: character

Notes: UNF:6:ZEQoSGaUKbcmGge1XYbhmw==

q9e1_prem_medsupp_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:SOWtSbMUBi/SyAMbw46fAw==

q9e2_prem_freq_medsupp

f5745466 Location:

Variable Format: character

Notes: UNF:6:B7boaT6txy/Oo+2I6Yx6ZA==

q9e1_prem_medadv

f5745466 Location:

Variable Format: character

Notes: UNF:6:3PkhZu9yYfPj7j/ExCFWpQ==

q9e1_prem_medadv_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:9FffHdl0ZKphQFIM0A71dQ==

q9e2_premfreq_medadv

f5745466 Location:

Variable Format: character

Notes: UNF:6:spf3gruJr+Y4QNeR33xfvA==

q9f_deduct_va

f5745466 Location:

Variable Format: character

Notes: UNF:6:gE7H4//ibLU+I2czxZ2SYA==

q9f_deduct_va_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:RbEmVKIQTEmOptV0gpG2kg==

q9f_deduct_tricare

f5745466 Location:

Variable Format: character

Notes: UNF:6:DEjCWvnVjAuKEes7BIoRQA==

q9f_deduct_tricare_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:ybSSUL0uPyIavtwO7A+X9A==

q9f_deduct_empl

f5745466 Location:

Variable Format: character

Notes: UNF:6:no4oS2BIxOuVaHKnMxoi1A==

q9f_deduct_empl_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:j3dbR6Xg6KPWKGLTuF4rTQ==

q9f_deduct_priv

f5745466 Location:

Variable Format: character

Notes: UNF:6:WNmrZeEKPwL238ZPJ6wTUA==

q9f_deduct_priv_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:ynfEQ8lCjYhVDp9bK1GZCw==

q9f_deduct_other

f5745466 Location:

Variable Format: character

Notes: UNF:6:S5ymT+MT14YbkaZa4WKmaw==

q9f_deduct_other_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:y2zSY/dWpq4yYC4+WjlmLA==

q9f_deduct_medd

f5745466 Location:

Variable Format: character

Notes: UNF:6:/3zvX1lFAay8HUtHcCC3Eg==

q9f_deduct_medd_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:pb1RyaEH2oiqa4DrwW0A2g==

q9f_deduct_medsupp

f5745466 Location:

Variable Format: character

Notes: UNF:6:jaHJDNWCcbGEee1xZ8rbeA==

q9f_deduct_medsupp_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:7NEpjsJ0CH71zMfjG6DeQw==

q9f_deduct_medadv

f5745466 Location:

Variable Format: character

Notes: UNF:6:W5nIm7iXcM+2+N488REUrw==

q9f_deduct_medadv_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:TUHoNud9VqJUXUWyu7s0dg==

q9g_max_va

f5745466 Location:

Variable Format: character

Notes: UNF:6:kOhdgtuQeAWr/t6jLjlhhQ==

q9g_max_va_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:GU2rTs9aIziqqlGkLUXHXg==

q9g_max_tricare

f5745466 Location:

Variable Format: character

Notes: UNF:6:oVETqw8nytBSuQ9Ny0VdEQ==

q9g_max_tricare_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:1rdrNyWAG8QdwNmkw4Xoow==

q9g_max_empl

f5745466 Location:

Variable Format: character

Notes: UNF:6:6gKQWHWNJ1ikOK+kT55njg==

q9g_max_empl_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:whHlEr9Ghu8VmrWS46oE6g==

q9g_max_priv

f5745466 Location:

Variable Format: character

Notes: UNF:6:nlNOFYyKDkfV8rQwr0gsKw==

q9g_max_priv_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:iPZyB0AwwMJw12Lc4nwv2A==

q9g_max_other

f5745466 Location:

Variable Format: character

Notes: UNF:6:9rv4Ouai54G4Ep9QWBtvPA==

q9g_max_other_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:SViWmctuvtifYPRd7LMSdw==

q9g_max_medd

f5745466 Location:

Variable Format: character

Notes: UNF:6:nchuRee+Jz61GQEoS/B30g==

q9g_max_medd_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:t51dLBUn1m6Cpwk/KeWZmw==

q9g_max_medsupp

f5745466 Location:

Variable Format: character

Notes: UNF:6:OLbauZ4QN3d8EbIrD9Df2Q==

q9g_max_medsupp_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:HOo1nu0/CBmwEk5NPsFU8w==

q9g_max_medadv

f5745466 Location:

Variable Format: character

Notes: UNF:6:P80dURvNE6z8P3a+0/YZBQ==

q9g_max_medadv_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:yP6F/p2q5eWDSHsobDsuqQ==

q10_wheelchair

f5745466 Location:

Variable Format: character

Notes: UNF:6:ibUxs3TRDeuaauuuMyyTGg==

q10_respiratory

f5745466 Location:

Variable Format: character

Notes: UNF:6:PPWKWLAYgtkSqZbL4NQ2qA==

q10_comm_device

f5745466 Location:

Variable Format: character

Notes: UNF:6:Rj2bF/uYrffbZZxz9CQYRw==

q10_home_mod

f5745466 Location:

Variable Format: character

Notes: UNF:6:oGfu8o/0wKUMTMRgyRZb8g==

q10_vehicle

f5745466 Location:

Variable Format: character

Notes: UNF:6:RRyv5nGKbXwhydQ1Wr8tew==

q10_gene

f5745466 Location:

Variable Format: character

Notes: UNF:6:IJ/+LGLVX0D1iGvO/WZltA==

q10_supplies

f5745466 Location:

Variable Format: character

Notes: UNF:6:mau+cg7N0S8u1qS2Wt/9BA==

q10_other

f5745466 Location:

Variable Format: character

Notes: UNF:6:ak6YmNmBwqAT9SIW/wsMdg==

q10_other_oe

f5745466 Location:

Variable Format: character

Notes: UNF:6:MWPmoAQOoX1SZbnc5W8CLA==

q10_pnta

f5745466 Location:

Variable Format: character

Notes: UNF:6:lyLeribwjMMw8sVdIddAdQ==

q10_other_fill_in

f5745466 Location:

Variable Format: character

Notes: UNF:6:arxJQAL/bXH+3gh8IPNtWA==

q11_pay_wheelchair

f5745466 Location:

Variable Format: character

Notes: UNF:6:hqGi70zxPsXb1HIIYMlGnw==

q11_pay_resiratory

f5745466 Location:

Variable Format: character

Notes: UNF:6:nWkMBv582kjB+lwz8pOnaA==

q11_pay_comm_device

f5745466 Location:

Variable Format: character

Notes: UNF:6:4Vy/W8tRltY1J6bjn1I44g==

q11_pay_home_mod

f5745466 Location:

Variable Format: character

Notes: UNF:6:l03xX1LWkVst3cTYZPa4bg==

q11_pay_vehicle

f5745466 Location:

Variable Format: character

Notes: UNF:6:mt0InRxLvbsmWsPh3TFtlg==

q11_pay_gene

f5745466 Location:

Variable Format: character

Notes: UNF:6:xRRRwxMatX9wNWjHCpBtzw==

q11_pay_supplies

f5745466 Location:

Variable Format: character

Notes: UNF:6:Rtt/951AsNmEvFFV2B5HCw==

q11_pay_other

f5745466 Location:

Variable Format: character

Notes: UNF:6:DqvWKr+o43hWssI9hbKHBw==

q12_cost_wheelchair

f5745466 Location:

Variable Format: character

Notes: UNF:6:Xm45Wi5JbE5KoTkKRFjJmg==

q12_cost_respiratory

f5745466 Location:

Variable Format: character

Notes: UNF:6:1HpS7nFTyxmYo5hbjUdOlw==

q12_cost_comm_device

f5745466 Location:

Variable Format: character

Notes: UNF:6:vDzhSkKMZoo78J3/k9ei1w==

q12_cost_home_mod

f5745466 Location:

Variable Format: character

Notes: UNF:6:V7IowGhbaP/D7/v2KzJDZg==

q12_cost_vehicle

f5745466 Location:

Variable Format: character

Notes: UNF:6:p7vzIA0IBZ4L+cPZa3qvIg==

q12_cost_gene

f5745466 Location:

Variable Format: character

Notes: UNF:6:Mw5JJf0ceL5yHxV5r2KIgQ==

q12_cost_supplies

f5745466 Location:

Variable Format: character

Notes: UNF:6:UWoJY1pWgwmZxwpEergkDg==

q12_cost_other

f5745466 Location:

Variable Format: character

Notes: UNF:6:t+KvUF8iHxNVQv8KpdbnKw==

q13_unable_wheelchair

f5745466 Location:

Variable Format: character

Notes: UNF:6:rNIBjF/zge147e54V/Ad5A==

q13_unable_respiratory

f5745466 Location:

Variable Format: character

Notes: UNF:6:zTCdwwv6pil6VAryxqUsBA==

q13_unable_comm_device

f5745466 Location:

Variable Format: character

Notes: UNF:6:QuuKdt4CB8hHh/+kQL8OjA==

q13_unable_home_mod

f5745466 Location:

Variable Format: character

Notes: UNF:6:zPtaketBl41gokV3ymmQZw==

q13_unable_vehicle

f5745466 Location:

Variable Format: character

Notes: UNF:6:AWJTgQr+Hwkwnp+PDki07A==

q13_unable_gene

f5745466 Location:

Variable Format: character

Notes: UNF:6:ER7QzmBAKTZn1Ytpy4LfWw==

q13_unable_supplies

f5745466 Location:

Variable Format: character

Notes: UNF:6:iWouT7ZHZbnR4u72WsFCEg==

q13_unable_other

f5745466 Location:

Variable Format: character

Notes: UNF:6:VkWasWGsWKxMXnA2dPgQnQ==

q13_unable_pnta

f5745466 Location:

Variable Format: character

Notes: UNF:6:VcEg3LonHs2iQnwKOUhfGQ==

q13_unable_na

f5745466 Location:

Variable Format: character

Notes: UNF:6:vVeFJMnRvlF+oP15Ty7K2Q==

q13_unable_fill_in

f5745466 Location:

Variable Format: character

Notes: UNF:6:KqbmtsO/laVqbwLtFiejlA==

q14_burden_one_time

f5745466 Location:

Summary Statistics: Min. 1.0; StDev 1.573556149672655; Max. 8.0; Valid 245.0; Mean 4.387755102040816;

Variable Format: numeric

Notes: UNF:6:o6xKtwp9Gaq16wMJGARVsg==

q14_burden_one_time_na

f5745466 Location:

Variable Format: character

Notes: UNF:6:vNL8yMuhRzJ8E2yNAemhNw==

q14_burden_one_time_pnta

f5745466 Location:

Variable Format: character

Notes: UNF:6:j2rZjLxr9wDrHREpxxBOlg==

q14_burden_one_time_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:0f5SnsJQ/LYFV+gJ/R0bag==

q15_drugs

f5745466 Location:

Variable Format: character

Notes: UNF:6:wkHRbtPBN9WwwUziJPtetA==

q15_care

f5745466 Location:

Variable Format: character

Notes: UNF:6:QyrZN6lM9euD61H3yK9GEg==

q15_activities

f5745466 Location:

Variable Format: character

Notes: UNF:6:hiPEmxdDqR9Q0x3wQNToSA==

q15_allied_health

f5745466 Location:

Variable Format: character

Notes: UNF:6:15jjXpHs9uxtqwhlFUA47g==

q15_hospital

f5745466 Location:

Variable Format: character

Notes: UNF:6:3gc04FejqZrGw9Z9IogEjQ==

q15_clinic

f5745466 Location:

Variable Format: character

Notes: UNF:6:rE33jitItFu1vF96hTh9Gg==

q15_outpatient

f5745466 Location:

Variable Format: character

Notes: UNF:6:9NBsaT6g1ieXOf8vrIa8xw==

q15_assisted_living

f5745466 Location:

Variable Format: character

Notes: UNF:6:0gW5KvGVu8jQ7wBDCGxxNg==

q15_supplies

f5745466 Location:

Variable Format: character

Notes: UNF:6:bDrIYutUF2ZQ1WRel2xSzw==

q15_other

f5745466 Location:

Variable Format: character

Notes: UNF:6:ay0yu+uGfgOY54PIIxINGg==

q15_other_oe

f5745466 Location:

Variable Format: character

Notes: UNF:6:D4IpiSwpoVIEOb3jszvC9w==

q15_pnta

f5745466 Location:

Variable Format: character

Notes: UNF:6:Jrwn9mw4TqyyAT+yor23hw==

q15_na

f5745466 Location:

Variable Format: character

Notes: UNF:6:thx4V4LlY4m4xOBLPRYjEA==

q15_other_fill_in

f5745466 Location:

Variable Format: character

Notes: UNF:6:0Qz5QgsHtCQDi9OSJ/8bWQ==

q16_pay_drugs

f5745466 Location:

Variable Format: character

Notes: UNF:6:4+eJbuTiWEAkY/t5qp9+sQ==

q16_pay_care

f5745466 Location:

Variable Format: character

Notes: UNF:6:wKI8v9duozRbYkqqOw/jrQ==

q16_pay_activities

f5745466 Location:

Variable Format: character

Notes: UNF:6:OqWStkVvv5TDd4toV+HZoQ==

q16_pay_allied_health

f5745466 Location:

Variable Format: character

Notes: UNF:6:HdOdokPWj58c5iadqATnGA==

q16_pay_hospital

f5745466 Location:

Variable Format: character

Notes: UNF:6:hreVZasPrS4WtsO5+zTcFg==

q16_pay_clinic

f5745466 Location:

Variable Format: character

Notes: UNF:6:cXXoeB2hszhoS2C/t9UeLQ==

q16_pay_outpatient

f5745466 Location:

Variable Format: character

Notes: UNF:6:SvmXv4aN4ZmQctiSZX73SQ==

q16_pay_assisted_living

f5745466 Location:

Variable Format: character

Notes: UNF:6:toQtNoOJhBC9kDuHFpZuVQ==

q16_pay_supplies

f5745466 Location:

Variable Format: character

Notes: UNF:6:1E7fs/FIR2q0HvGFSyvKXQ==

q16_pay_other

f5745466 Location:

Variable Format: character

Notes: UNF:6:4ncHCBPTTLNB8pUIeNRhDg==

q17_cost_drugs

f5745466 Location:

Variable Format: character

Notes: UNF:6:la75JhwpwZu2fonjRoDsDw==

q17_cost_care

f5745466 Location:

Variable Format: character

Notes: UNF:6:iug2WQqSdcUf00Wb6LpCcw==

q17_cost_activities

f5745466 Location:

Variable Format: character

Notes: UNF:6:Y9SzKd1vCa6HL8xR9haJgA==

q17_cost_allied_health

f5745466 Location:

Variable Format: character

Notes: UNF:6:U8e0AsodCcXnG6mA737EIw==

q17_cost_hospital

f5745466 Location:

Variable Format: character

Notes: UNF:6:9pf1Nns1rI/j2NpWLA4paQ==

q17_cost_clinic

f5745466 Location:

Variable Format: character

Notes: UNF:6:9s+/iijEvGGa2bvJKXnSkA==

q17_cost_outpatient

f5745466 Location:

Variable Format: character

Notes: UNF:6:IR8mCR6+80iibvHDPgBKEw==

q17_cost_assisted_living

f5745466 Location:

Variable Format: character

Notes: UNF:6:sreNCG2jNsWk4IHSawZgZQ==

q17_cost_supplies

f5745466 Location:

Variable Format: character

Notes: UNF:6:eUFP1WuHMxWEyITmuufHxg==

q17_cost_other

f5745466 Location:

Variable Format: character

Notes: UNF:6:NGmSppGsahGDbK2jvUthsg==

q18_unable_drugs

f5745466 Location:

Variable Format: character

Notes: UNF:6:RK9vh4pYLJQotJuLgyGcYA==

q18_unable_care

f5745466 Location:

Variable Format: character

Notes: UNF:6:5Bwxn9e2R8183/uxBUf/ZQ==

q18_unable_activities

f5745466 Location:

Variable Format: character

Notes: UNF:6:WBAbzC/JQwpZt++Zr5bmbA==

q18_unable_allied_health

f5745466 Location:

Variable Format: character

Notes: UNF:6:rlqYzjmVSok5A6WXjLOYKw==

q18_unable_hospital

f5745466 Location:

Variable Format: character

Notes: UNF:6:bjoqOyjKUnhN2Al67+Mrsw==

q18_unable_clinic

f5745466 Location:

Variable Format: character

Notes: UNF:6:2XUIw2U5MMqV3ctvcY2aDg==

q18_unable_outpatient

f5745466 Location:

Variable Format: character

Notes: UNF:6:mUrhq5aKkIDwWvT4/cZYCg==

q18_unable_assisted_living

f5745466 Location:

Variable Format: character

Notes: UNF:6:nUir7s+J21eMMgiRdHpAZA==

q18_unable_supplies

f5745466 Location:

Variable Format: character

Notes: UNF:6:sdQzynBi94Rh/GthP8M3hQ==

q18_unable_other

f5745466 Location:

Variable Format: character

Notes: UNF:6:k0L6HbqhmDZisdZrX2KDhw==

q18_unable_pnta

f5745466 Location:

Variable Format: character

Notes: UNF:6:qQhe5+FKxkdQQO6v/1qVhw==

q18_unable_na

f5745466 Location:

Variable Format: character

Notes: UNF:6:hvvWwTg8nOKNkyEqaY/fYw==

q18_unable_fill_in

f5745466 Location:

Variable Format: character

Notes: UNF:6:Rrxvn+n5PGhdZsbOB6qYhA==

q19_burden_recur

f5745466 Location:

Summary Statistics: Min. 1.0; Max. 10.0; StDev 3.020524699874596; Valid 118.0; Mean 4.067796610169491

Variable Format: numeric

Notes: UNF:6:UgIP4Cc7/0oE0Ai8OQFKSg==

q19_burden_recur_na

f5745466 Location:

Variable Format: character

Notes: UNF:6:JyKp4SnE0tHF6mj8MhHVew==

q19_burden_recur_pnta

f5745466 Location:

Variable Format: character

Notes: UNF:6:1tPD8IYWdm1AwLwZnlzxmg==

q19_burden_recur_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:JZui8kf6ZuvI8gZldmwK0g==

q20_va_home

f5745466 Location:

Variable Format: character

Notes: UNF:6:6Dcf/Vpn0s2JZstMAmpRCQ==

q20_va_vehicle

f5745466 Location:

Variable Format: character

Notes: UNF:6:8Q1WsZ4w3G3ARTsONkhUYA==

q20_va_wheelchair

f5745466 Location:

Variable Format: character

Notes: UNF:6:FMKNubfQ9Pks9uPBywxzcg==

q20_va_dk

f5745466 Location:

Variable Format: character

Notes: UNF:6:Mcm12Ye/jM/AK8vgMCBGUw==

q20_va_none

f5745466 Location:

Variable Format: character

Notes: UNF:6:1oEyy0F5Q63OeD80FXTDqQ==

q21_borrow

f5745466 Location:

Variable Format: character

Notes: UNF:6:3K/RM7J48ciKtffe5LWUzA==

q22_bankrupt

f5745466 Location:

Variable Format: character

Notes: UNF:6:Y6PM5DQ6NAvaArFaeXpZSg==

q23_working

f5745466 Location:

Variable Format: character

Notes: UNF:6:+xYAYJdqLv4Cgo9SwcMEJQ==

q24_maintain_insur

f5745466 Location:

Variable Format: character

Notes: UNF:6:VuZIMQ5JC8zMyKArcb4NBw==

q25_lose_insur

f5745466 Location:

Variable Format: character

Notes: UNF:6:bzyg7/JOh7iBlScNUBGt2g==

q26_lose_work_insur

f5745466 Location:

Variable Format: character

Notes: UNF:6:6dMs9jTEa1vigunK3OqSOQ==

q27_stop_work_pals

f5745466 Location:

Variable Format: character

Notes: UNF:6:BDmruB9B05TnD/r9ckBCfQ==

q28_stop_work_cg

f5745466 Location:

Variable Format: character

Notes: UNF:6:R8m1oz9IxcbzmBUUVfnrug==

q29_qualify_medicare

f5745466 Location:

Variable Format: character

Notes: UNF:6:TwSOimB1bi2ToRxwMAroIw==

q29_qualify_medicaid

f5745466 Location:

Variable Format: character

Notes: UNF:6:2EgFxyAEJswR1heeimUwkw==

q29_no_qualify

f5745466 Location:

Variable Format: character

Notes: UNF:6:i0sQjXUo7qj9kht1g1Hv8w==

q29_pnta

f5745466 Location:

Variable Format: character

Notes: UNF:6:zXRA7KF7/mutxYiBoGp89w==

q30_1_treatments

f5745466 Location:

Summary Statistics: Mean 2.924324324324324; Valid 185.0; Max. 5.0; Min. 1.0; StDev 1.498079459893604

Variable Format: numeric

Notes: UNF:6:k3NBbiI4sUJ8QdIq0pKnKg==

q30_1_treatments_na

f5745466 Location:

Variable Format: character

Notes: UNF:6:gimWFMReEwgHNlSsDmEf2Q==

q30_2_services

f5745466 Location:

Summary Statistics: StDev 1.5142458368000942; Mean 2.9613259668508287; Valid 181.0; Min. 1.0; Max. 5.0

Variable Format: numeric

Notes: UNF:6:HauMkqrtc4kdbtkQML+wPg==

q30_2_services_na

f5745466 Location:

Variable Format: character

Notes: UNF:6:eZCprQh/wmdNreUWXxfkew==

q30_3_devices

f5745466 Location:

Summary Statistics: Mean 2.9308176100628933; StDev 1.5015582490813082; Valid 159.0; Min. 1.0; Max. 5.0

Variable Format: numeric

Notes: UNF:6:O8sSrVygztTKeERJxkQzoQ==

q30_3_devices_na

f5745466 Location:

Variable Format: character

Notes: UNF:6:9bt8DrtvcalEGr6kYYUJ0g==

q30_4_understand

f5745466 Location:

Summary Statistics: Min. 1.0; Max. 5.0; Mean 3.0837696335078535; Valid 191.0; StDev 1.4375777981032327;

Variable Format: numeric

Notes: UNF:6:7omJDLPF5ji/s1jRDDKmsg==

q30_4_understand_na

f5745466 Location:

Variable Format: character

Notes: UNF:6:3igw7lYkVet8ivbf/Mqfng==

q30_5_paperwork

f5745466 Location:

Summary Statistics: Valid 188.0; Max. 5.0; Min. 1.0; StDev 1.475209487178535; Mean 2.925531914893617

Variable Format: numeric

Notes: UNF:6:3hP4oU5K4dMLXdoK8bjZww==

q30_5_paperwork_na

f5745466 Location:

Variable Format: character

Notes: UNF:6:+uClZABtTLT/d+prZImsqg==

q30_6_bill_disputes

f5745466 Location:

Summary Statistics: Mean 3.044117647058824; Valid 136.0; Min. 1.0; Max. 5.0; StDev 1.5341430087321812;

Variable Format: numeric

Notes: UNF:6:2nibsu75HMIsx4O4jiSjug==

q30_6_bill_disputes_na

f5745466 Location:

Variable Format: character

Notes: UNF:6:U8wu+bepRsc+hS+jLRA6qQ==

q30_7_appeals

f5745466 Location:

Summary Statistics: Mean 3.257425742574257; Valid 101.0; StDev 1.5662277315035285; Max. 5.0; Min. 1.0

Variable Format: numeric

Notes: UNF:6:PPZY4Omohf0xbGSkaMdDxQ==

q30_7_appeals_na

f5745466 Location:

Variable Format: character

Notes: UNF:6:JaC0C16jSN3HbZP3tFMMGQ==

q30_8_collectors

f5745466 Location:

Summary Statistics: StDev 1.7340683397700933; Min. 1.0; Max. 5.0; Mean 2.9090909090909087; Valid 66.0

Variable Format: numeric

Notes: UNF:6:Gr0ePBTCPxI7MoovNvwafQ==

q30_8_collectors_na

f5745466 Location:

Variable Format: character

Notes: UNF:6:0YHK39g+m/eQ7B7Ltoqj0w==

q9e1_prem_empl_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:htfhgNPCfWhVB4SAXBPOcQ==

q9e1_prem_medadv_new2

f5745466 Location:

Summary Statistics: StDev 599.979583117786; Max. 4500.0; Valid 60.0; Mean 236.7133333333334; Min. 0.0;

Variable Format: numeric

Notes: UNF:6:V9U0zqlaQzcVt/eAJ2tuBw==

q9e1_prem_medd_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:AF6u+ce/CIldopdGMZN00A==

q9e1_prem_medfee_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:Nb764XSdkEiezl59oYolMw==

q9e1_prem_medsupp_new2

f5745466 Location:

Summary Statistics: Max. 4746.57; Min. 0.0; Mean 403.50600000000003; Valid 70.0; StDev 733.7401283604277;

Variable Format: numeric

Notes: UNF:6:8fy8NwqJi/L2iLFh60wRgA==

q9e1_prem_other_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:b6TKhe78/jL0PncXr7lkHw==

q9e1_prem_priv_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:6RuwVIvf2+sKu7chm6kuxw==

q9e1_prem_tricare_new2

f5745466 Location:

Summary Statistics: Mean 68.53333333333336; Valid 15.0; Min. 0.0; Max. 600.0; StDev 179.35036208759766;

Variable Format: numeric

Notes: UNF:6:wmrreZLmyazrWPbz9qJo/g==

q9e2empl_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:FLFLZonz019LhekkJlpk0Q==

q9e2medadv_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:U436Vz2ElzUZ4CfsPMTVng==

q9e2medd_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:La3inQ6A1PY7FOIdQEJe+g==

q9e2medfee_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:ETL3jAObsECMA/ZvHj2crQ==

q9e2medsupp_new2

f5745466 Location:

Summary Statistics: StDev 4.476028718790448; Mean 9.754716981132075; Min. 0.0; Max. 12.0; Valid 53.0;

Variable Format: numeric

Notes: UNF:6:BnrSMIail9mgEmMI+qsyMA==

q9e2oth_new2

f5745466 Location:

Summary Statistics: StDev 5.626944108483752; Mean 5.0625; Max. 12.0; Min. 0.0; Valid 16.0;

Variable Format: numeric

Notes: UNF:6:bXKRujVZvI04uZ1E4rOwbQ==

q9e2priv_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:8g/gRM07JGp3BTE0fCUasA==

q9e2tricare_new2

f5745466 Location:

Summary Statistics: Min. 0.0; Mean 1.5294117647058822; Max. 12.0; Valid 17.0; StDev 3.954706801060344

Variable Format: numeric

Notes: UNF:6:HV35mpFaBUzp6zzQZ+4vNA==

q9f_deduct_empl_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:0n8OHTK1uWSrSsD9rApr6Q==

q9f_deduct_medadv_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:6Q++7u0J5lSuhRY2vKDieA==

q9f_deduct_medd_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:lbZDOyHtzd8YwqbMov3Bpg==

q9f_deduct_medsupp_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:C9QtAh3ItXQrudwqeGJFtg==

q9f_deduct_other_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:yREB6FvxD8ThuwBMKKZ6Uw==

q9f_deduct_priv_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:TPmtD6mb9RUMB1pGSr0K9Q==

q9f_deduct_tricare_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:eTmXoJScA2ejaP86txg5Ig==

q9g_max_empl_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:/QhBd5kDQwAqBK/uyTi/rg==

q9g_max_medadv_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:YjH/3J8m6PZ3NhhwOxgylA==

q9g_max_medd_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:BwLUoe6E5urUEASip8jfIQ==

q9g_max_medsupp_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:Pxig90E1cTbJ/16LLeLolw==

q9g_max_other_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:KLVbhWnX+B2mT8FwqN1qMQ==

q9g_max_priv_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:swtbuF4KqpmEaMlj8G7X5w==

q9g_max_tricare_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:silzh1WXb/mi/Bumx3FGSg==

q12_cost_comm_device_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:a8tq/Yf3dlr11hx++//Q2g==

q12_cost_gene_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:mJLh6MbXyEd55NTgxwqVBQ==

q12_cost_home_mod_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:i+gXNNjXCFto79vAjiu4oQ==

q12_cost_respiratory_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:we0O9jvx3Ed5tV7MEHgSBg==

q12_cost_vehicle_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:nMcFebUzzJFutjgoFHYXQQ==

q12_cost_wheelchair_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:LP/nXrJWQIK/9q6V1xSMIA==

q12_cost_supplies_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:4YJY+/1UPQV5TBtKnTICFQ==

q12_cost_other_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:Lj2mB3VfgTo9O0ZJ3aGgTQ==

q17_cost_activities_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:92hYrEKRXoH8PPEnhRVb0A==

q17_cost_allied_health_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:jhNbXYdXqoNCIqWZq+Rf1w==

q17_cost_assisted_living_new2

f5745466 Location:

Summary Statistics: StDev 23825.190386850994; Min. 2000.0; Valid 12.0; Max. 90000.0; Mean 42316.666666666664

Variable Format: numeric

Notes: UNF:6:MxLZALPpcQbibCgtALqYLw==

q17_cost_care_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:iwLKHagU9FI3/QvXHf1/Dw==

q17_cost_clinic_new2

f5745466 Location:

Summary Statistics: Min. 35.0; StDev 1372.16056620386; Max. 6000.0; Valid 50.0; Mean 952.0120000000001

Variable Format: numeric

Notes: UNF:6:KRMYLHxxF9ZFXAlW4g9RtA==

q17_cost_drugs_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:o49F1ALNtXxFoZJJs8CQpQ==

q17_cost_hospital_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:LxTuwLaw0Z9NYAGm+Wcg6Q==

q17_cost_outpatient_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:+WG92XFWFMdHvkqQrRITLA==

q17_cost_supplies_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:XuxXVEXjcseSPR3vbOuwMA==

q17_cost_other_new2

f5745466 Location:

Variable Format: character

Notes: UNF:6:YQrWd6WJOvyNMqy7pawsgA==

VariableName

f4441016 Location:

Variable Format: character

Notes: UNF:6:KLEfYsFO0zi49F5oNp1UkQ==

QuestionNumber

f4441016 Location:

Variable Format: character

Notes: UNF:6:Y6NROJzkJZDD/BY98bUU/A==

ALSFocusSurvey(Wave1)

f4441016 Location:

Variable Format: character

Notes: UNF:6:Q2fVALgl4Tjf7Air+2BpFQ==

QuestionDescription

f4441016 Location:

Variable Format: character

Notes: UNF:6:pc99eSAieVsKJnEIUO6bJw==

QuestionforPersonwithALS

f4441016 Location:

Variable Format: character

Notes: UNF:6:kEGLf449YG7bg2x9eNcTQw==

QuestionforCurrentCaregiver

f4441016 Location:

Variable Format: character

Notes: UNF:6:IfaihhGck5hkdVKUE/AmZw==

QuestionforPastCaregiver

f4441016 Location:

Variable Format: character

Notes: UNF:6:6rY6G8Foy6buLgeVB6DFvQ==

VariableLabel

f4441016 Location:

Variable Format: character

Notes: UNF:6:iTUTHvK6okGQ4/aCFDlaDA==

ResponseOptions

f4441016 Location:

Variable Format: character

Notes: UNF:6:uoINwvf2FotNKKcJP/4Blg==

Value

f4441016 Location:

Variable Format: character

Notes: UNF:6:GPfcJ66SH0lOJvYN4wBKJg==

ValueLabel

f4441016 Location:

Variable Format: character

Notes: UNF:6:wLh35DqqI84jicu3yfatNw==

Other Study-Related Materials

Label:

Wave 1_Data Files Description.docx

Text:

This file describes the content of two data files in this dataset

Notes:

application/vnd.openxmlformats-officedocument.wordprocessingml.document