The INCLUDE Clinical Data Management Workshop was held virtually on Monday, February 10, 2025, and organized by the NIH INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project. Areas of focus included:
- Common Data Elements
- Clinical Data Ontologies
- Data Modeling, Data Curation and Harmonization
- Extraction of data from electronic health records
- The role of AI-powered tools in Clinical Data
The goals of the workshop were to align the Clinical Data Management effort between the INCLUDE Down Syndrome Cohort Development Program (DS-CDP) and the INCLUDE Data Coordinating Center (DCC) effectively and to modernize the existing Clinical Data Management workflow. The workshop featured 14 insightful presentations, panel discussions, and breakout sessions, and drew over 90 registrants.
An executive summary is under development.