Last year the committee created a REDCap survey tool to catalog the existing cohorts of children/adolescents with Down syndrome. The goal is to facilitate collaborations and increase sample sizes for specific questions of importance in Down syndrome. This “Existing Cohorts Database” (ECD) will be posted on the T21RS website as a resource. If an investigator has a specific question, they would engage each cohort’s principal investigator (PI) and develop a research plan. Subsequent to building the ECD, the NIH INCLUDE effort decided to initiate the same type resource, but include all ages. Our committee is working with them to finds ways to complement these efforts.
