Researchers

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.

Requesting Access to the Data Management Resource

To request access to the PDBP Data Management Resource (DMR), please click here and fill out the online form. Depending on your anticipated use of the system, you may wish to request access to the following modules:

  • Query: displays collected data in table format
  • Order Manager: allows users to place Biosample Orders
  • NINDS Bio Repository Group: grants access to the PDBP biosample catalog and allows user to create biosample order

Please note only PDBP investigators have access to the GUID and ProFoRMS modules in the Data Management Resource.

You are required to upload a signed PDBP Data Use Certificate with your request.

Your request will be reviewed by the PDBP DMR Data Access Committee to verify your intended use is appropriate and your affiliated institution is recognized as a research organization. You will be notified by email if your account request has been approved.

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 PDBP participant. To enable broad sharing of both de-identified clinical data and biospecimen resources, participants must be properly consented.

If you need assistance with the PDBP DMR, please consult the PDBP DMR User Documentation, an online help resource available here.

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.