Understanding the Data Dictionary

Clinical Research Forms used by the PDBP

NINDS common data elements and Parkinson's disease unique data elements have been linked to each question in the clinical research assessment tools used by the PDBP. A reference file containing the PDBP clinical research forms with associated data elements is provided below:

Data Elements

A data element is a logical unit of data, that has a name, precise definition, and clear enumerated values (codes) if applicable. A data element occupies the space provided by the field(s) on a paper/electronic case report form (CRF) or field(s) in a database record.

Data elements are either approved common data elements (CDEs) from NINDS or unique data elements (UDEs) created within the PDBP DMR system. Occasionally, research data may not align perfectly to the CDEs. In this case, researchers will do one of the following:

  • Provide aliases to existing CDEs
  • Create new unique data elements (UDEs) that do not exist in the system and have been generated during the course of PD research

Published Data Elements

The library below contains all common data and unique data elements. The library includes published and approved data elements that have been created from PDBP's data dictionary as well as the final version of the NINDS PD common data elements.