Stephanie Santoro MD, Massachusetts General Hospital , and Sarah Luthy MD, Cincinnati Children’s Hospital
April 2025 – September 2026
The research will address critical gaps in knowledge about the clinical and developmental experiences of children who are older than one year with either full or partial trisomy 13 and 18, including those who passed away within the last five years, and their families, as they navigate health care and educational services. Recruiting from participants in the TRIS (Tracking Rare Incidence Syndromes) database (Deb Bruns, Southern Illinois University), the team will conduct focus groups and a survey. These data will help the Collaborative prioritize future research to be responsive to the needs of families.
