Development of Healthcare Transition for Patients With Congenital Adrenal Hyperplasia
NCT07611786 · Status: NOT_YET_RECRUITING · Type: OBSERVATIONAL · Enrollment: 40
Last updated 2026-05-28
Summary
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.
Conditions
- Congenital Adrenal Hyperplasia
Interventions
- OTHER
-
exposure to healthcare transition protocol
CAH-T Curriculum Visits CAH-T Visit 1 (V1) CAH-T Visit 1 will occur approximately 3 months after enrollment and will include: * Review of CAH disease management * Stress dosing education * Emergency hydrocortisone instruction * Medical alert education * Teach-back demonstration of emergency injection technique * Discussion of adherence, mental health, fertility/sexual health, bone health, and cardiometabolic health * Introduction to healthcare transition concepts * Development of individualized transition goals For participants aged ≥18 years: * Identification of adult endocrinology provider * Development of transfer plan * Medical summary review/update Relevant educational materials are included in attachments. CAH-T Visit 2 (V2) CAH-T Visit 2 will occur approximately 6 months after enrollment and will include: * Reinforcement of CAH self-management concepts * Review of emergency preparedness * Review of transfer readiness * Finalization of transfer planning
Sponsors & Collaborators
-
Neurocrine Biosciences
collaborator INDUSTRY -
University of Alabama at Birmingham
lead OTHER
Principal Investigators
-
Christy Foster, MD · University of Alabama at Birmingham
Eligibility
- Min Age
- 16 Years
- Sex
- ALL
- Healthy Volunteers
- Yes
Timeline & Regulatory
- Start
- 2026-06-30
- Primary Completion
- 2028-07-31
- Completion
- 2029-07-31
Countries
- United States
Study Locations
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