We are pleased to share our Center's resources with approved scientists in accordance with federal and institutional resource-sharing and privacy policies, including the Health Insurance Portability and Accountability Act (HIPAA). All resource requests are reviewed and approved by a panel of Center committee members.
Before any resources can be released, we require that investigators provide evidence of institutional human subjects and/or animal studies approval for their research. Investigators with research proposals involving human subjects must also pass an approved human subject research education course.
Investigators must adhere to federal, state and institutional policies on data encryption policies pertaining to the use of our Center's data, including the Health Information Technology for Economic and Clinical Health Act (HITECH). A copy of our institution's certification on meeting the requirements as set forth in 21 CFR Part 11 is attached.
How to Cite the Use of Resources in Publications or Press Releases
Each publication, press release, written/oral presentations or other document about research supported by our Center's NIH award must include an acknowledgement of our NIH award support and a disclaimer such as:
"Research reported in this publication was supported by the National Institute on Aging of the National Institutes of Health under Award Number P50 AG005134. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health."
Additionally, any use of our Center's anonymized genetic data must include the following acknowledgement statement:
"Data for this study were prepared, archived, and distributed by the National Institute on Aging Alzheimer's Disease Data Storage Site (NIAGADS) at the University of Pennsylvania (U24-AG041689 & related awards), funded by the National Institute on Aging" AND include this --> Acknowledgement as well.
All NIH-funded investigators who use our Center's resources must comply with the NIH Public Access Policy, in accordance with Division G, Title II, Section 218 of PL 110-161 (Consolidated Appropriations Act, 2008):
The Director of the National Institutes of Health shall require that all investigators funded by the NIH submit or have submitted for them to the National Library of Medicine’s PubMed Central an electronic version of their final, peer-reviewed manuscripts upon acceptance for publication, to be made publicly available no later than 12 months after the official date of publication: Provided, That the NIH shall implement the public access policy in a manner consistent with copyright law.
Please refer to our Research Resources page for contact information regarding your interests.
As part of the National Institutes of Health's Alzheimer's Disease Centers network, the Massachusetts ADRC adheres to the Biospecimen Best Practice Guidelines (attached) for the Alzheimer's Disease Centers.