Data Management Resource

Data Management Resource

The National Institute of Neurological Disorders and Stroke supports the Parkinson's Disease Biomarkers Program through research that promotes biomarker discovery and development of key resources for the broad research community. To enable the standardized collection of clinical data, the NINDS has supported the development of a controlled access PDBP Data Management Resource (DMR). The PDBP DMR provides the following key IT solutions:

  • Global Unique Identifier (GUID): Enables data to be associated with a subject without exposing/transferring Personally Identifying Information (PII)
  • Data Dictionary: Provides common definitions (NINDS CDE and unique data elements) so data are consistently captured and recorded across PDBP studies.
  • Protocol and Forms Research Management System (ProFoRMS): Manage studies, manage subjects, manage forms, collect data and run reports and queries.
  • Data Submission: Part of the ProFoRMS system that provides electronic data entry forms supporting NINDS CDEs and unique data elements
  • Data Validation: Validate data against the data dictionary, upload validated data to the DMR database.
  • Data Query: Search PDBP DMR database by study, clinical form and/or data element.
  • Medical Image Processing, Analysis, and Visualization (MIPAV): Prepares image files for submission and validation to the PDBP DMR. The MIPAV tool supports the receipt of unprocessed brain images in DICOM format and receipt of processed images in a variety of formats including DICOM, MINC 1.0 and 2.0, Analyze, NIfTI-1, AFNI and SPM.

Data Query

The "Query" tool is a data informatics program within the PDBP Data Management Resource (DMR) which enables researchers who are using the PDBP DMR to search datasets collected across PDBP projects and other NINDS funded Parkinson's disease clinical studies. The Query tool is based on NINDS PD common data elements and unique elements created within the PDBP DMR. The Query tool allows searches to be done across studies, clinical forms and/or data elements. Detailed study synopses and the recently developed Data Dictionary provide information on the collection parameters and variables associated with PDBP data, so that researchers can better define data searchers and corresponding results.

Using the DMR Query Tool

Please view the webinar located here to assist you in finding the data you are looking for in the Query tool.

Data Management Resource Statistics


Number of Participants Enrolled in PDBP Projects

The chart graphically displays the number of participants per PDBP clinical site based on a total enrollment of participants as of March, 2015. Enrollment as of March 13, 2015 represents 88% of the total anticipated enrollment for the program.


Number of clinical data forms available in the PDBP DMR

The chart graphically displays the number of clinical data forms available in the PDBP Data Management Resource (DMR) per clinical site, as of March 13, 2015. A total of 27,384 data forms have been entered in the PDBP DMR, as of March 13, 2015 representing 99% of the overall data available.

Timeline

The Parkinson's Disease Biomarkers Program is committed to accelerating the pace of Parkinson's disease biomarker discovery. New website functionality, program campaigns, and system tools will be periodically released. Check back frequently to see our updates.

July 2014
  • Biosample order enhancements
  • Form structure search
  • Website updates
  • Account request improvements
Q4 2014
  • Direct file downloads
  • Website reporting capability
  • Additional biorepositories available
Q2 2015
  • Single BRICS and ProFoRMS repository
  • Integrated Validation and Upload Tools