Development of Healthcare Transition for Patients With Congenital Adrenal Hyperplasia

Part of paid clinical trials in Birmingham, Alabama.

Sponsor
University of Alabama at Birmingham
Study ID
NCT07611786
Status
Not Yet Recruiting

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Conditions

  • Congenital Adrenal Hyperplasia

Eligibility Criteria

Sex
ALL
Age
16 Years - N/A
Healthy Volunteers
Accepted

Interventions

  • exposure to healthcare transition protocol — OTHER
    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

Study Details

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.

Key Dates

Start date
Jun 30, 2026
Status verified
May 2026
Primary completion
Jul 31, 2028
Completion
Jul 31, 2029

Study Design

Enrollment
40 participants (estimated)

Arms

  • Arm: adolescent and young adult with congenital adrenal hyperplasia
  • Arm: guardian/caregiver of adolescent/young adult with congenital adrenal hyperplasia
  • Arm: clinical provider of patients with congenital adrenal hyperplasia

Primary Outcome Measure

assessment of CAH knowledge [ Time Frame: at baseline, 6 months, and 12 month after initiation of healthcare transition readiness ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
University of Alabama at BirminghamBirminghamAlabama35233
Christy Foster, MD
[email protected]
2056389107
Leslie Pitts, PhD
[email protected]

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By research site
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