P449: A project to characterize children with trisomy 13 and 18 who survived infancy: Study design and stakeholder input
Abstract
Given that mortality rates among children with trisomy 13 and 18 are as high as 85-90%, few studies have explored the experiences of surviving children as they and their families navigate health care systems and educational and social services. As such, there is little empirical data characterizing the experiences of children with trisomy 13 and 18 who survive past infancy, including their unmet medical, social, economic, and educational needs. In order to improve the health and well-being of children with trisomy 13 and 18, we designed a stakeholder-informed study to characterize children with trisomy 13 and 18 who survived infancy.
Fields of Study & Subjects
Ethics and Legal Issues in Pediatric Healthcare
Family and Disability Support Research
Down syndrome and intellectual disability research
Publication details
- Journal / source
- Genetics in Medicine Open
- Volume
- 4
- Pages
- 103941–103941
- Publication date
- 1 January 2026
- Language
- EN