Data Sharing Guidelines

Data and Biospecimen Sharing Guidelines

The Mount Sinai ADRC is committed to providing resources for researchers. Investigators often approach the ADRC with requests for data that may include neuropsychological performance measures, brain tissue, plasma, DNA, genotype and sequence data, imaging, and CSF, all of which are banked by the ADRC.

We developed the ADRC data sharing guidelines in accordance with the National Institutes of Health Alzheimer’s Disease Cooperative Study data sharing policy. For more information, see NIH Data Sharing Policy at the National Institutes of Health Office of Extramural Research.

Please see below for contact information for various kinds of data requests and who will provide more information about required forms and proposals.

Please note that all publications resulting from analyses on provided data or samples must list the ADRC grant P30AG066514 in the support section.

Researchers may be asked to provide a proposal that includes:

  • Aims and protocols to be used
  • Evidence of expertise in performing the study
  • Compliance with ethical and regulatory requirements
  • Agreement to the ADRC’s data sharing and collaborative policies
  • Material Transfer Agreement (MTA)

Proposals will be evaluated using the following considerations:

  • Scientific merit
  • Compliance with the ADRC’s mission and priorities
  • Specimen availability
  • Availability of resources

DNA and plasma requests: DNA and plasma samples are banked by the ADRC. DNA is also available through NCRAD and genotype data is available through NIAGADS. Requests should be addressed to Alison Goate, DPhil, leader of the ADRC’s Genomics and Genetics Core and Director of the Ronald M. Loeb Center for Alzheimer's Disease or to Towfique Raj, PhD, Co-Director of the Genomics and Genetics Core.

Brain tissue requests: Direct all requests to Vahram Haroutunian, PhD, Director of the ADRC Neuropathology Core, who will review inquiries on a case-by-case basis with the rest of the Tissue Allocation Committee (Mary Sano, PhD, Director of the ADRC, Patrick Hof, MD, Samuel Gandy, MD, and Alison Goate, DPhil, Associate Directors of the ADRC).

Imaging data requests: Direct all requests for PET or MRI data to Trey Hedden, PhD, the Director of the ADRC Biomarker Core and the Director of Neuroimaging and Biomarker Research in Aging and Alzheimer’s disease at Mount Sinai.

Clinical data requests: Direct all data archive requests to Carolyn Zhu PhD, Director of the ADRC Data Core, via ADRC clinical request form. These data are the property of investigators who have generated the data. While the ADRC strongly encourages and supports collaboration and data sharing, the final decision about sharing data belongs to the project's PI. Additionally, ADRC cores generate data that are available through the National Alzheimer’s Coordinating Center.