PDBP: Parkinson's Disease Biomarkers Program

National Institute of Neurological Disorders and Stroke

Researchers

Data Management Resource

Overview of PDBP Data Management Resource

The National Institute of Neurological Disorders and Stroke (NINDS) Parkinson's Disease Biomarkers Program Data Management Resource (PDBP DMR) is a web-based tool and resource for the Parkinson's Disease Biomarkers Community.

The PDBP DMR includes development of a web-based data management system that provides tools to PDBP supported projects for both the collection and quality assurance of data in a standardized format. The PDBP DMR also coordinates the assembly of de-identified data into a common database thus enabling the query and distribution of aggregate data for the acceleration of PD biomarkers discovery and validation. The PDBP DMR synchronizes efforts across government and non-government organizations involved in PD biomarker research as well, by developing a federated database. It also serves the general public by providing a website with updated content on projects and their scientific discoveries funded via the NINDS PDBP.

Data Submission

To submit data through the PDBP DMR, the researcher or health care professional will need to establish a PDBP DMR account. All data submitted to the PDBP DMR is de-identified, and this is accomplished through the generation of a global unique identifier (GUID) for each PDPB participant. To enable broad sharing of both de-identified clinical data and biospecimen resources, participants must be properly consented.

Data Request

To request data from the PDBP DMR, the investigator electronically submits a data request form, along with a Data Use Certification Agreement (DUC) to the PDBP DMR. These documents are reviewed by the PDPB Data Access Committee (DAC)

NINDS Repository

The NINDS Repository (at Coriell) is a biorepository which has banked biospecimens for neurological disease research since 2001. To date, it comprises over 30 thousand de-identified samples from subjects with Parkinson's disease, amyotrophic lateral sclerosis, stroke, Tourette syndrome, and other neurological disorders, as well as from healthy controls, and has facilitated many landmark studies in gene discovery. Hence, it is a natural fit to expand its role to include biospecimens for biomarker research. Projects contributing biospecimens for the study of biomarkers will work with the NINDS Repository to assure standardized collection, banking, and distribution procedures so that harmonization across studies can allow for larger studies and more meaningful analyzes of potential biomarkers. A Biospecimen Resource Access Committee (BRAC) will review the request and communicate decisions regarding availability of biospecimens to the researchers.

Regarding Financial Benefit

"PI Name", the "Name of the Organization", the National Institute of Neurological Disorders and Stroke, National Institute of Health, and other researchers that obtain your de-identified samples and clinical data will not profit directly from them. However, if research using your samples or data does lead to new tests, drugs, or other commercial products as a result of knowledge gained using your samples, you will not share in any profits.

Funding Announcements

Parkinson's Disease Biomarkers Funding Opportunity and Related Announcements

Notices

Active RFAs

None currently

Archived Funding Opportunity Announcements (FOAs)

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The National Institutes of Health
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