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 with a focus on Common Data Elements, Clinical Data Ontologies, Data Modeling, Data Curation and Harmonization, as well as the role of AI-powered tools in these activities.
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, each offering specialized expertise, and drew over 90 registrants.
The workshop was structured into two sessions held in the morning and afternoon. Each session featured a variety of speakers, a panel discussion, and two breakout sessions. The morning session focused on Common Data Elements, Ontologies, and Data Models for Down syndrome and Co-occurring Conditions, and the afternoon session focused on Data Capture, Curation, and Harmonization in the Age of AI.