ALS Focus Wave 8 – Clinical Trials and Treatment Needs Surveyhttps://doi.org/10.7910/DVN/XE1SKQThe ALS AssociationHarvard Dataverse2025-05-232025-05-23T23:05:21ZThe NeuroVERSE record contains the following files: <OL> <LI>ALSFocus_Demographics_Survey_Public – ALS Focus Demographics Survey written questions.</LI> <LI>ALSFocus_CTTN_Survey_Public – ALS Focus Clinical Trials and Treatment Needs Survey written questions.</LI> <LI>ALSFocus_HealthStatus_Survey_Public – ALS Focus Health Status Survey written questions.</LI> <LI>ALSFocus_Demographics_Methodologies_Public – ALS Focus Demographics Survey data cleaning approaches and guidance for data analysts.</LI> <LI>ALSFocus_CTTN_Methodologies_Public – ALS Focus Clinical Trials and Treatment Needs Survey data cleaning approaches and guidance for data analysts.</LI> <LI>ALSFocus_Demograhics_Dictionary – ALS Focus Demographics Survey data dictionary. <LI>ALSFocus_CTTN_Dictionary – ALS Focus Clinical Trials and Treatment Needs (and Health Status Survey) data dictionary.</LI> <LI>ALSFocus_Demographics_Public_Stata – ALS Focus Demographics Survey data file in Stata (.dta) format.</LI> <LI>ALSFocus_CTTN_Public_Stata – ALS Focus Clinical Trials and Treatment Needs Survey data in Stata (.dta) format.</LI> </OL>Medicine, Health and Life SciencesALSSurveyALS FocusClinical trialParticipationTreatmentNeedPreferenceSymptomsDrugBenefitRiskDemographicsDisease historyHealth status2025-05-23Katsovskiy, Igor2025-03-24DATA 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 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. 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.