The goal of the PDBP is to support new and existing research and resource development promoting biomarker discovery for Parkinson's disease. To achieve this goal the PDBP projects are supported through the PDBP Data Management Resource (PDBP DMR) and the NINDS Repository. The PDBP DMR is developed and maintained by the National Institutes of Health (NIH) Center for Information Technology (CIT). The PDBP DMR serves stakeholders through support of electronic data capture, clinical site management, data quality assessment and data access.
Projects contributing de-identified clinical data to the PDBP DMR enter data through a web-based data entry system, using electronic clinical research forms for general and PD specific NINDS common data elements (CDEs). Following quality assessment, the de-identified clinical data captured on these forms is deposited in a secure password protected database. Industry and academic researchers can request access to data in this database through an electronic data request form. The PDBP Data Access Committee (DAC) reviews requests for access to the PDBP DMR data to assure that use of data will be for research purposes only, and that no subject's identity can be revealed. All data generated through the use of PDBP biospecimens will be submitted to the PDBP DMR for broad data sharing. The PDBP DMR provides a query tool that enables qualified researchers to conveniently search and access clinical, imaging, genetic, and biologic data.
Biospecimens will be banked by the NINDS Repository for processing, storage, and when approved, distribution for Biomarkers research. Researchers interested in accessing biospecimens related to the clinical data can request samples through an electronic data request form and submission of a completed NINDS Repository MTA. A Biospecimen Resource Access Committee (BRAC) will review the request and communicate decisions regarding availability of biospecimens to the researcher. Biospecimens will be shipped from the NINDS Repository.