Data Agreement

Section I: Access, Use, and Safeguards

A. I will receive de-identified data and will not attempt to establish the identity of, or attempt to contact any of the subjects with data in NCRAD.

B. I will not attempt to identify any specific study sites, unless NCRAD has approved such identification as part of my project's protocol.

C. I understand that distributing these data to a third party is prohibited, and therefore I will not distribute these data beyond the uses outlined in this agreement. A third party is defined as anyone who is not a collaborator or co-author on the analyses defined in my proposal.

D. I agree that any use of artificial intelligence (AI) tools, including generative, analytical, or large language models, in connection with the Data must be conducted in a manner that guarantees the security and confidentiality of data inputs and outputs. I will not use AI tools or platforms that transmit or process data through public-facing, cloud-hosted, or third-party systems unless those platforms:

• Provide contractual assurances of confidentiality,
• Do not use inputs or outputs for model training, product development or commercial purposes, and
• The platform meets established standards for secure data handling of sensitive research data, including, at a minimum, data encryption, appropriate and reasonable access controls, and audit logging.

I understand that utilizing AI tools, including generative and analytical models, carries a potential risk of unintentional data disclosure. I understand that due to how these tools store and process information, data may be sent, saved, viewed, or used in unforeseen ways. I understand that it is my responsibility to prevent the misuse of data received under this agreement by conducting appropriate due diligence and only using secure systems. I further understand that I will be held responsible for data breaches or other misuse of data resulting from my decision to use AI to analyze the Data.

E. I will require anyone on my team who uses the data, or anyone with whom I share these data, to comply with this Data Agreement.

F. I will accurately provide the requested information about persons who will use the data and analyses that are planned using these data.

G. I will comply with any rules and regulations imposed by my institution and its institutional review board in requesting and using these data.

H. I understand that any data I download may change as new quality assurance measures are implemented and data records are updated.

I. I will ensure that Investigators who utilize data obtained from NCRAD use appropriate administrative, physical, and technical safeguards to prevent use or disclosure of the data other than as provided for by this Agreement.

J. I will report any use or disclosure of the data not provided for by this Agreement of which I become aware within 15 days of becoming aware of such use or disclosure.

Section II: Data Analysis

A. I will respond promptly and accurately to NCRAD's requests for updates on the status of my analyses.

B. I will review the data documentation provided by NCRAD and consult with NCRAD research coordinators in order to ensure the accurate use and description of study data in my analysis and any ensuing presentations or publications, as well as to ensure the understanding of subtle data complexities.

C. If more than 1 year passes before publication, I will download an updated dataset to ensure the most accurate and up to date data is used.

Section III: Publication

A. I will include the NCRAD acknowledgement for all samples and data obtained:

Samples and data from the National Centralized Repository for Alzheimer's Disease and Related Dementias (NCRAD), which receives government support under a cooperative agreement grant (U24 AG21886) awarded by the National Institute on Aging (NIA), were used in this study. We thank contributors who collected samples used in this study, as well as patients and their families, whose help and participation made this work possible.

B. I will acknowledge the work by each specific study that went into accumulating the data and samples and its funding source(s), and will include language in the manuscripts associated with the correct collection. Every study has specific acknowledgement language. As new catalogs are added, additional language will continue to be listed. Please see the Publication Acknowledgement of Grant Support Page for each study's language.

C. I will notify NCRAD if my manuscript is accepted for publication and/or presentation.

D. I will ensure the proper submission of all published work to PubMed Central (PMC) in order to comply with the NIH Public Access Policy.

I understand that failure to abide by these guidelines will result in termination of my privileges to access NCRAD data.

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