Data Agreement

I request access to data housed at the National Centralized Repository for Alzheimer's Disease and Related Dementias (NCRAD) for the purpose of scientific investigation, teaching, or the planning of clinical research studies and agree to the following terms:

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

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

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

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

H. 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.

I. 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.

  1. NIA-LOAD:

    The NIA-LOAD study supported the collection of samples used in this study through National Institute on Aging (NIA) grants U24AG026395 and R01AG041797. We thank contributors, including the Alzheimer’s Disease Centers who collected samples used in this study, as well as patients and their families, whose help and participation made this work possible.

  2. Indianapolis-Ibadan:

    The Indianapolis-Ibadan dementia project is a 20 year comparative community based epidemiological study of the prevalence, incidence and risk factors for AD and dementia in populations of African origin, elderly African Americans in Indianapolis, Indiana and Yoruba in Ibadan, Nigeria. It was supported from 1991-2012 by NIH grants RO1 AG09956 and P30 AG 10133. We would like to take this opportunity to thank the many faculty and staff of the University of Ibadan and Indiana University School of Medicine for their involvement as well as the 4000 plus elderly participants at each of the sites.

  3. ARTFL:

    The Advancing Research and Treatment for Frontotemporal Lobar Degeneration (ARTFL) study receives support through a U.S Department of Health and Human Services (DHHS) and the National Institute of Neurological Disorders and Stroke (NINDS)/National Center for Advancing Translational Sciences (NCATS) grant U54NS092089. We thank the staff and investigators of the study as well as the participants and their families, whose help and participation made this work possible.

  4. LEFFTDS:

    The Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS) Study was made possible through the support of the U.S Department of Health and Human Services (DHHS) and the National Institute on Aging (NIA)/National Institute of Neurological Disorders and Stroke (NINDS) grant U01AG045390. We thank the staff and investigators of the study as well as the participants and their families, whose help and participation made this work possible.

  5. 4RTNI:

    The Four Repeat Tauopathy Neuroimaging Initiative study was made possible by National Institute on Aging grant 2R01AG038791. We thank the staff and investigators of the study as well as the participants and their families, whose help and participation made this work possible.

  6. ABC-DS:

    The Alzheimer’s Biomarkers Consortium – Down Syndrome (ABC-DS) project is a longitudinal study of cognition and blood based, genetic and imaging biomarkers of Alzheimer’s Disease. This study is funded by the National Institute on Aging (NIA) grants U01AG051406 and U01AG051412 and the National Institute for Child Health and Human Development (NICHD). We thank the ABC-DS study participants and the ABC-DS research and support staff for their contributions to this study.

  7. 90+:

    The 90+ Study receives support through a National Institute on Aging (NIA) grant R01AG21055. We thank the staff and investigators of the study as well as the participants and their families, whose help and participation made this work possible.

  8. ADC:

    Samples are contributed by the NIA-funded ADRCs: P30 AG019610 (PI Eric Reiman, MD), P30 AG013846 (PI Neil Kowall, MD), P30 AG062428 (PI James Leverenz, MD) P30 AG066462 (PI Scott Small, MD), P30 AG066511 (PI Allan Levey, MD, PhD), P30 AG047266 (PI Todd Golde, MD, PhD), P30 AG010133 (PI Andrew Saykin, PsyD), P30 AG066507 (PI Marilyn Albert, PhD), P30 AG062421 (PI Bradley Hyman, MD, PhD), P30 AG062422 (PI Ronald Petersen, MD, PhD), P30 AG066514 (PI Mary Sano, PhD), P30 AG066512 (PI Thomas Wisniewski, MD), P30 AG013854 (PI Robert Vassar, PhD), P30 AG066518 (PI Jeffrey Kaye, MD), P30 AG010161 (PI David Bennett, MD), P30 AG066515 (PI Victor Henderson, MD, MS), P30 AG010129 (PI Charles DeCarli, MD), P30 AG066519 (PI Frank LaFerla, PhD), P30 AG062429 (PI James Brewer, MD, PhD), P30 AG062422 (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), P30 AG066468 (PI Oscar Lopez, MD), P50 AG005142 (PI Helena Chui, MD), P30 AG012300 (PI Roger Rosenberg, MD), P30 AG049638 (PI Suzanne Craft, PhD), P30 AG066509 (PI Thomas Grabowski, MD), P30 AG062715 (PI Sanjay Asthana, MD, FRCP), P30 AG066444 (PI John Morris, MD), P30 AG066508 (PI Stephen Strittmatter, MD, PhD).

  9. ANGI:

    The collection of the Amyloid Neuroimaging and Genetics Initiative (ANGI) samples was supported by a grant from the Alzheimer’s Association (ANGI/IDEAS-17-497186). We thank the Alzheimer’s Association for their support and the ANGI study participants for their contribution to the study. We would also like to acknowledge the Imaging Dementia – Evidence for Amyloid Scanning Study (iDEAS) from whom amyloid imaging and other clinical data were obtained.

  10. iPSC INITIATIVE:

    Samples and associated data are contributed by the National Institute on Aging (NIA) grant:

    • P50 AG016573 (PI Mathew Blurton-Jones, PhD)
    • 1 RF1 AG048083-01 (PI Lawrence Goldstein, PhD)
    • P50 AG047366 (PI Victor Henderson, MD, MS)
    • P50 AG005134 (PI Bradley Hyman, MD, PhD)
    • R56 AG057478 (PI Suman Jayadev, MD)
    • R01 AG062148 (PI Jessica Young, PhD)

    We thank the staff and investigators of the study as well as the participants and families, whose help and participation is invaluable to this research effort.

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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