National Alzheimer's Coordinating Center
Data Use Agreement
I REQUEST ACCESS TO DATA collected by the National Alzheimer's Coordinating Center (NACC). I make this request for the purpose of scientific investigation, teaching, or planning of clinical research studies. In making this request, I agree to the following terms:
- I will receive access to de-identified data and will not attempt to establish the identity of, or attempt to contact, any of the NACC subjects. Further, I will not attempt to identify specific Alzheimer's Disease Centers (ADCs), unless NACC has approved such identification as part of my project's protocol.
- I understand that distributing these data in any manner to a third party is strictly 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 that has been submitted to NACC.
- I will require anyone on my team who uses these data (i.e., any collaborator or co-author on the analysis defined in the proposal that I have submitted to NACC) to comply with all the terms of this Data Use Agreement. If I receive an unrestricted data set for non-commercial entities and non-commercial research projects, I understand that I am strictly prohibited from sharing this data with collaborators associated with commercial companies for use by that company.
- I will respond promptly and accurately to NACC's requests for updates on the status of my analysis.
- I will comply with any rules and regulations imposed by my institution and its institutional review board in requesting these data, and I will report any use or disclosure of NACC data not permitted by this Agreement. The report, containing full details of the breach, will be made by email to firstname.lastname@example.org within 15 days of my becoming aware of such use or disclosure.
- I acknowledge that NACC data do not constitute a population-based sample but rather are best thought of as a case series.
- I will review the data documentation provided by NACC and consult with NACC research scientists in order to ensure the accurate use and description of NACC data in my analysis, as well as to ensure the understanding of subtle data complexities such as missing data, loss to follow-up, and differences due to form version changes.
- I understand that any data I download may change as new quality assurance measures are implemented and data records are updated.
If I publish abstracts using data from NACC, I further agree to the following:
- I will acknowledge the NACC grant number, and the ADCs as the source of the data, in the abstract.
- I will submit my abstract to the NACC Publications System for tracking purposes.
- I will acknowledge the NACC grant and Center support by including the statement provided in No. 13, below, in any resulting poster or presentation.
If I publish manuscripts using data from NACC, I further agree to the following:
- I will acknowledge the NACC grant and Center support by including the following statement in the acknowledgments section of the manuscript:
The NACC database is funded by NIA/NIH Grant U01 AG016976. NACC data are contributed by the NIA-funded ADCs: P30 AG019610 (PI Eric Reiman, MD), P30 AG013846 (PI Neil Kowall, MD), P50 AG008702 (PI Scott Small, MD), P50 AG025688 (PI Allan Levey, MD, PhD), P50 AG047266 (PI Todd Golde, MD, PhD), P30 AG010133 (PI Andrew Saykin, PsyD), P50 AG005146 (PI Marilyn Albert, PhD), P50 AG005134 (PI Bradley Hyman, MD, PhD), P50 AG016574 (PI Ronald Petersen, MD, PhD), P50 AG005138 (PI Mary Sano, PhD), P30 AG008051 (PI Thomas Wisniewski, MD), P30 AG013854 (PI Robert Vassar, PhD), P30 AG008017 (PI Jeffrey Kaye, MD), P30 AG010161 (PI David Bennett, MD), P50 AG047366 (PI Victor Henderson, MD, MS), P30 AG010129 (PI Charles DeCarli, MD), P50 AG016573 (PI Frank LaFerla, PhD), P50 AG005131 (PI James Brewer, MD, PhD), P50 AG023501 (PI Bruce Miller, MD), P30 AG035982 (PI Russell Swerdlow, MD), P30 AG028383 (PI Linda Van Eldik, PhD), P30 AG053760 (PI Henry Paulson, MD, PhD), P30 AG010124 (PI John Trojanowski, MD, PhD), P50 AG005133 (PI Oscar Lopez, MD), P50 AG005142 (PI Helena Chui, MD), P30 AG012300 (PI Roger Rosenberg, MD), P30 AG049638 (PI Suzanne Craft, PhD), P50 AG005136 (PI Thomas Grabowski, MD), P50 AG033514 (PI Sanjay Asthana, MD, FRCP), P50 AG005681 (PI John Morris, MD), P50 AG047270 (PI Stephen Strittmatter, MD, PhD).
- I will submit my manuscript to the NACC Publications System for the required brief administrative review and for tracking purposes prior to submitting my manuscript to a journal.
- I will notify NACC if my manuscript is accepted for publication and/or presentation.
- I will ensure the proper submission of all published work to PubMed Central (PMC) in order to comply with the NIH Public Access Policy.