Current Research Studies

Duchenne Outcomes Research Interchange Data Enrichment through EHR Extraction

DORI

  • Condition(s): Other
  • Phase: Registry

What is the goal of the study?

The purpose of the project is to improve and refine the standards of care to optimize function, quality of life, and survival of DBMD patients. To meet this objective, we will enhance the Duchenne Registry PRO dataset by adding clinician-reported outcome data to existing patient-reported natural history data through electronic transfer of EHR from sites within PPMD?s nationwide network of Certified Duchenne Care Centers (CDCCs).

Who can participate in the study?

Please contact the study team listed below to learn more.

Study Team: