Join the hybrid INCLUDE Project Clinical Data Management Workshop on Monday, February 10, 2025, from 9:00 am - 5:00 pm ET in Rockville, MD.
Individuals with Down syndrome (DS), the condition caused by trisomy 21 (T21), display a unique clinical risk profile, whereby they are protected from some medical conditions, such as most solid malignancies, but highly predisposed to others, such as congenital heart disease, autism spectrum disorders, autoimmune diseases, sleep apnea and Alzheimer's disease, etc. Despite significant research efforts, the mechanisms underlying these resiliencies and risks remain largely unknown, which is due in part to the lack of standardized clinical data management approaches in this population.
This workshop, organized by the NIH INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project will 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.