Data Management Resource | PDBP

Data Management Resource | PDBP
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Researchers
Data Management Resource
Data Management Resource
The NINDS PDBP Data Management Resource (DMR) advances Parkinson's research through the support of electronic data capture, clinical site management, data quality assessment and data access.
What is the DMR?
The DMR is a collection of modular components that provide researchers with access to tools that allow for the collection and quality assurance of data in a standardized format.  The DMR coordinates the assembly of de-identified data into a common database, enabling the query and distribution of aggregate data.
DMR Updates & Release Notes
What is available in the DMR?
Global Unique Identifier (GUID)
Enables data to be associated with a subject without exposing/transferring Personally Identify Information (PII). The GUID module is connected to the NINDS Centralized GUID server for GUID sharing across PDBP, NINDS, and NIA.
Click here to learn more
Data Dictionary
Provides common definitions so data is consistently captured and recorded across PDBP studies
Protocol and Forms Research Management System (ProFoRMS)
Manage studies, subjects, and 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
Datastore
Enables a researcher to expand their research through creation of a secondary study that includes their data and data that is available through the PDBP
Medical Image Processing, Analysis, and Visualization (MIPAV)
Prepares image files for submission and validation to the PDBP DMR
Using the DMR
Make the most of the tools available.  Read up on how to submit data, query data, request access to biospecimens, and more.
Learn how to use the DMR
Accessing the DMR
In order to gain access to the DMR, you must first submit an online application.  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.
Begin application process