Key questions: 1. Recruitment and retention: what approaches can facilitate recruitment and retention of families or participants to build a DS cohort and understand natural history, including underrepresented groups? 2. Cohort development across the lifespan: how can we ensure that cohorts are prepared for those with DS across the lifespan for future clinical trials? 3. Building an investigator pipeline: how can we build the pipeline of investigators who have DS clinical trial experience?