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NeuroVERSE - Supports distribution and sharing of datasets related to neurological research.

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21 to 30 of 40 Results

ALSFocusWave4_Telehealth.tab Sep 6, 2022 - ALS Focus Wave 4 – Telehealth Survey Tabular Data - 675.9 KB - 217 Variables, 386 Observations - UNF:6:uiv0uxYieEVcDdAr7LemQQ== This file contains responses to the Telehealth survey for people with ALS and current caregivers. This survey was available in Wave 4. This file contains a new ‘dyad’ variable indicating which people with ALS and caregiver participants are linked.
ALSFocusWave3_ALSFRSandVC.tab Jan 21, 2022 - ALS Focus Wave 3 – Caregiver Needs Survey Tabular Data - 69.2 KB - 18 Variables, 642 Observations - UNF:6:HMSxkidxCSONjTfJ3pzidA== This data file contains responses to questions on ALSFRS-R and Vital Capacity scores, which opened in Wave 1 for participants with ALS. Starting in Wave 2, participants with ALS may answer these questions on a repeated basis, but not more than once per calendar day.
ALSFocusWave3_CaregiverNeeds.tab Jan 21, 2022 - ALS Focus Wave 3 – Caregiver Needs Survey Tabular Data - 1.0 MB - 138 Variables, 620 Observations - UNF:6:Z43QrsBGaer2IS8T9JQ7Ew== This file contains responses to the Caregiver Needs survey for current and past caregivers. This survey was available in Wave 3.
ALSFocusWave3_DataDictionary.tab Jan 21, 2022 - ALS Focus Wave 3 – Caregiver Needs Survey Tabular Data - 9.3 KB - 9 Variables, 71 Observations - UNF:6:YHmPeRGv/hPpTCeeo56A4g== This is the data dictionary for surveys fielded in ALS Focus Wave 3. This file has been updated to include a new layout, revised variable names to improve consistency, and greater detail on survey questions and programming logic (e.g., skip patterns).
ALSFocusWave3_Demographics.tab Jan 21, 2022 - ALS Focus Wave 3 – Caregiver Needs Survey Tabular Data - 592.5 KB - 69 Variables, 1420 Observations - UNF:6:ELs4OXJiJ1XtAu5QfcGBuQ== This file contains responses to the About Me demographics survey since ALS Focus launched in February 2020. This survey is designed for current caregivers, past caregivers, and participants with ALS.
ALSFocusWave3_FilesDescription.docx Jan 21, 2022 - ALS Focus Wave 3 – Caregiver Needs Survey MS Word - 38.5 KB - MD5: f01812d44b68faad0e988beb63eeddda Description of Public Data Files
ALSFocusWave3_HealthStatus.tab Jan 21, 2022 - ALS Focus Wave 3 – Caregiver Needs Survey Tabular Data - 147.3 KB - 29 Variables, 496 Observations - UNF:6:GxdBWJtDQHTgHEEH8vtVxg== This data file contains responses to the Health Status survey, which opened for participants with ALS in Wave 2. Participants with ALS may answer these questions on a repeated basis, but not more than once per calendar day.
ALSFocus_Wave1_Public.tab Jan 18, 2022 - ALS Focus Wave 1 - Insurance Needs and Financial Burdens Survey Tabular Data - 897.1 KB - 382 Variables, 529 Observations - UNF:6:S6UD5mVYy2MbkFdqh7qoGw== 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 o...
Wave 1_Data Files Description.docx Jan 18, 2022 - ALS Focus Wave 1 - Insurance Needs and Financial Burdens Survey MS Word - 36.2 KB - MD5: c77d32577291f28787faeb3dfbde29cc This file describes the content of two data files in this dataset
ALSFocusWave2_ALSFRSandVC.tab Nov 2, 2021 - ALS Focus Wave 2 - What Matters Most Survey Tabular Data - 61.9 KB - 18 Variables, 576 Observations - UNF:6:Ioajnyd0B4c93potdH0MwQ== This data file contains responses to questions on ALSFRS-R and Vital Capacity scores, which opened in Wave 1. Starting in Wave 2, participants with ALS may answer these questions on a repeated basis, but not more than once per calendar day.

ALSFocusWave4_Telehealth.tab

Sep 6, 2022 - ALS Focus Wave 4 – Telehealth Survey

Tabular Data - 675.9 KB - 217 Variables, 386 Observations -

This file contains responses to the Telehealth survey for people with ALS and current caregivers. This survey was available in Wave 4. This file contains a new ‘dyad’ variable indicating which people with ALS and caregiver participants are linked.

ALSFocusWave3_ALSFRSandVC.tab

Jan 21, 2022 - ALS Focus Wave 3 – Caregiver Needs Survey

Tabular Data - 69.2 KB - 18 Variables, 642 Observations -

This data file contains responses to questions on ALSFRS-R and Vital Capacity scores, which opened in Wave 1 for participants with ALS. Starting in Wave 2, participants with ALS may answer these questions on a repeated basis, but not more than once per calendar day.

ALSFocusWave3_CaregiverNeeds.tab

Jan 21, 2022 - ALS Focus Wave 3 – Caregiver Needs Survey

Tabular Data - 1.0 MB - 138 Variables, 620 Observations -

This file contains responses to the Caregiver Needs survey for current and past caregivers. This survey was available in Wave 3.

ALSFocusWave3_DataDictionary.tab

Jan 21, 2022 - ALS Focus Wave 3 – Caregiver Needs Survey

Tabular Data - 9.3 KB - 9 Variables, 71 Observations -

This is the data dictionary for surveys fielded in ALS Focus Wave 3. This file has been updated to include a new layout, revised variable names to improve consistency, and greater detail on survey questions and programming logic (e.g., skip patterns).

ALSFocusWave3_Demographics.tab

Jan 21, 2022 - ALS Focus Wave 3 – Caregiver Needs Survey

Tabular Data - 592.5 KB - 69 Variables, 1420 Observations -

This file contains responses to the About Me demographics survey since ALS Focus launched in February 2020. This survey is designed for current caregivers, past caregivers, and participants with ALS.

ALSFocusWave3_FilesDescription.docx

Jan 21, 2022 - ALS Focus Wave 3 – Caregiver Needs Survey

MS Word - 38.5 KB -

Description of Public Data Files

ALSFocusWave3_HealthStatus.tab

Jan 21, 2022 - ALS Focus Wave 3 – Caregiver Needs Survey

Tabular Data - 147.3 KB - 29 Variables, 496 Observations -

This data file contains responses to the Health Status survey, which opened for participants with ALS in Wave 2. Participants with ALS may answer these questions on a repeated basis, but not more than once per calendar day.

ALSFocus_Wave1_Public.tab

Jan 18, 2022 - ALS Focus Wave 1 - Insurance Needs and Financial Burdens Survey

Tabular Data - 897.1 KB - 382 Variables, 529 Observations -

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 o...

Wave 1_Data Files Description.docx

Jan 18, 2022 - ALS Focus Wave 1 - Insurance Needs and Financial Burdens Survey

MS Word - 36.2 KB -

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

ALSFocusWave2_ALSFRSandVC.tab

Nov 2, 2021 - ALS Focus Wave 2 - What Matters Most Survey

Tabular Data - 61.9 KB - 18 Variables, 576 Observations -

This data file contains responses to questions on ALSFRS-R and Vital Capacity scores, which opened in Wave 1. Starting in Wave 2, participants with ALS may answer these questions on a repeated basis, but not more than once per calendar day.

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