The purpose of this study is to implement and evaluate the feasibility and acceptability of a structured healthcare transition program for adolescents and young adults with congenital adrenal hyperplasia (CAH). The study will also examine preliminary effects of the program on transition readiness, disease-specific self-management knowledge, emergency preparedness, continuity of endocrine care, and health-related quality of life as participants transition from pediatric to adult healthcare services.
Diagnosis of congenital adrenal hyperplasia (any subtype or severity)
Age ≥16 years
Active follow-up within the pediatric endocrinology clinic
English-speaking
Significant cognitive impairment precluding participation
Inability to complete study procedures
Inability to provide informed consent/assent
University of Alabama at Birmingham
Lead sponsor
Neurocrine Biosciences
Collaborator