Data Management Resource

Policy

The NINDS Parkinson's Disease Biomarkers Program has developed: 1) a policy for publications using either PDBP clinical data or biospecimen resources; 2) a PDBP user code of conduct; 3) guidance for informed consent elements that enable de-identified data sharing and biospecimen sharing with the broader research community, inclusive of both academic and industry investigators; and 4) a controlled access policy for PDBP de-identified clinical data. Account access to the PDBP DMR is available at Data Management Resource.

Policy Documents

PDBP Investigators

Forms

Committees

  • PDBP Steering Committee - The PDBP Steering Committee is composed of NINDS staff and project PIs. A chair and vice-chair will be selected by the PDBP PIs and the positions will be rotated on an annual basis. The Steering Committee will have monthly calls and biannual in person meetings to assure the smooth running of the program. PDBP Steering Committee Composition (pdf)
  • Parkinson's Disease Biospecimen Resource Access Committee (BRAC) - Requests for access to PD Biospecimens collected via the PDBP, BioFiND, will be administrated and reviewed by the Parkinson's Disease BRAC. This committee is composed of Parkinson's disease scientists as well as NINDS and Michael J. Fox (MJFF) staff. Requests for access are submitted via PAR-14-340 (http://grants.nih.gov/grants/guide/pa-files/PAR-14-340.html). For questions, email NINDS-PD-BRAC@ninds.nih.gov. View more.
  • PDBP Data Access Committee (DAC) - The DAC will be composed of NINDS staff and PDBP operation staff. Requests for access to PDBP data requires completion of a Data Use Request form and compliance with the PDBP Data Use Certification Agreement. Requests will be reviewed in a timely fashion by the DAC.
  • DMR Liaison Committee - The DMR Liaison Committee is an Ad Hoc Committee comprised of experts in the data management, clinical neurology, and biomarkers research fields, who assess the data management tools and functionality from a user's perspective, and give input regarding future enhancements.