Data Management Resource

Healthcare Professionals

The Parkinson's Disease Biomarkers Program (PDBP) was established to advance discovery of biomarkers that will improve the efficiency and outcome of Phase II clinical trials for Parkinson's disease (PD). To accomplish this goal the PDBP supports: 1) hypothesis driven clinical biomarker discovery research and 2) the standardized collection of clinical data and biospecimen samples that will enable biomarker exploratory efforts. Standardized collection of clinical data is accomplished through a required set of clinical research forms and electronic data entry via the ProFoRMS module in the PDBP Data Management Resource (DMR). Each participating clinical site follows a standardized schedule for patient visits and clinical data collection. Standardized biospecimen collection is accomplished through the routine application of biospecimen collection protocols across the clinical sites. Biospecimens are sent to the NINDS Cell and DNA repository for cataloging, quality assessment and distribution.

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.

For additional information on requesting an account, please visit the PDBP Requesting An Account page on our wiki.

Depending on your anticipated use of the system, you may wish to request access to the following modules:

  • If you are member of the PDBP consortium and plan to submit and access data, please request access to:
    • Data Dictionary: definitions of data element used in collected data
    • Study: access to collected data by type of form and date of submission
    • Query: displays collected data in table format

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.