ALS Survey Questions D7 caregiver_FINAL.pdf

This file is part of "IMPACT ALS - Investigation and Measuring Patient and Caregiver Trends About ALS".

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File Citation
The ALS Association, 2019, "ALS Survey Questions D7 caregiver_FINAL.pdf", IMPACT ALS - Investigation and Measuring Patient and Caregiver Trends About ALS, https://doi.org/10.7910/DVN/HG3MYW/K44YZ6, Harvard Dataverse, V2
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The ALS Association, 2019, "IMPACT ALS - Investigation and Measuring Patient and Caregiver Trends About ALS", https://doi.org/10.7910/DVN/HG3MYW, Harvard Dataverse, V2
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Our Community Norms as well as good scientific practices expect that proper credit is given via citation. Please use the data citation shown on the dataset page.

Custom Dataset Terms - the following Custom Dataset Terms have been defined for this dataset.

This Agreement is a legal contract between you and the ALS Association (“ALSA”), which specifically states the license terms, liability, limitations and warranty relating to your use of the ALS Impact Data (“Data”).

Data are subject to the specific license conditions, and subject to the liability and warranty limitations of this license Agreement.

IF YOU DESIRE A NON-EXCLUSIVE, NON-ASSIGNABLE, NON-TRANSFERRABLE, ROYALTY FREE LICENSE TO USE DATA FOR SECONDARY ANALYSES, YOU ARE STATING YOUR ACCEPTANCE OF ALL THE TERMS IN THIS AGREEMENT IN FULL.

You are not authorized in any manner to use the ALSA's name, logos, web graphics, or trademarks without express written permission from ALSA.

Limited Rights of use

You agree that all rights, titles and interests relating to Data belong to ALSA, 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 this Agreement.
You agree that you did not receive any rights to copyright, rights to trademark ownership or patents, or any other rights or licenses that belong either to ALSA, or to the owner of Data, other than those given in this Agreement. You agree that you shall not share Data with third parties without the written permission of ALSA. Data shall not be used for any purpose not defined in this Agreement or sold without the written permission of ALSA. 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 legislation, not to attempt to identify subjects, and not to combine accessed Data with other sources of data that would lead to the identification of any individual.

Termination of this Agreement

You agree that ALSA may terminate this Agreement at any time without notice if Data were used by you in violation of any law or of any terms or limitations imposed by this Agreement.

If this Agreement is terminated, license granted under this Agreement will be revoked, and you must either destroy Data or return to ALSA.

Publication

You are encouraged to publish and disseminate discoveries derived from Data. You must acknowledge ALSA as the source of data and shall utilize the ALSA’s language for insertion into publications. You will not publish, or otherwise release any findings or conclusions derived from analysis of Data without prior approval from ALSA.

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. ALSA 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.

Indemnity

You agree to indemnify, defend and hold blameless ALSA against any and all damages or loss incurred by you, including without limitation any legal fees, as a result of or in connection with using Data.

ALSA provides Data to Data Requestor for the research purpose.
ALSA retains ownership of any rights it may have in Data, and Data Requestor does not obtain any rights in Data.
Data Requestor acknowledges the importance of data privacy of individuals to whom accessed Data may relate, and, accordingly, commits to comply with all applicable data privacy protection legislation, not to attempt to identify or contact subjects, and not to combine accessed Data with other sources of data that would lead to the identification of any individual.
Data Requestor agrees 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 ALSA.
Data Requestor agrees 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 IRB or ethics review or approval that may be required.
Data Requestor shall promptly report to ALSA any use or disclosure of Data not provided for by this Agreement of which it becomes aware.
Data Requestor shall acknowledge ALSA as the source of Data in all written, visual, or oral public disclosures concerning Data Requestor’s research using Data, as appropriate in accordance with any specific format that will be indicated by ALSA.
Data Requestor will not publish, or otherwise release any findings or conclusions derived from Analysis of Data without prior written approval from ALSA.
Before Data Requestor submits a paper or abstract for publication or otherwise intends to publicly disclose information about the results of research, ALSA will have thirty (30) days from receipt to review proposed manuscripts and ten (10) days from receipt to review proposed abstracts to ensure that Data is appropriately protected. ALSA may request in writing that the proposed publication or other disclosure be delayed for up to thirty (30) additional days as necessary to protect proprietary information.
Data are provided “as is”. ALSA MAKES NO REPRESENTATIONS AND EXTENDS NO WARRANTIES OF ANY KIND, EITHER EXPRESSED OR IMPLIED. THERE ARE NO EXPRESS OR IMPLIED WARRANTIES OF MERCHANTABILITY OR FITNESS FOR A PARTICULAR PURPOSE, OR THAT THE USE OF DATA WILL NOT INFRINGE ANY PATENT, COPYRIGHT, TRADEMARK, OR OTHER PROPRIETARY RIGHTS. Notwithstanding, ALSA, to the best of its knowledge and belief, has the right and authority to provide Data to Data Requestor for research purpose.
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Except to the extent prohibited by law, Data Requestor assumes all liability for damages which may arise from its use, storage, disclosure, or disposal of Data. ALSA will not be liable to Data Requestor for any loss, claim, or demand made by Data Requestor, or made against Data Requestor by any other party, due to or arising from the use of Data by Data Requestor, except to the extent permitted by law when caused by the gross negligence or willful misconduct of ALSA. No indemnification for any loss, claim, damage, or liability is intended or provided by either party under this Agreement.
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