Development of Healthcare Transition for Patients With Congenital Adrenal Hyperplasia (NCT07611786) | Clinical Trial Compass
Not Yet RecruitingNot Applicable
Development of Healthcare Transition for Patients With Congenital Adrenal Hyperplasia
United States40 participantsStarted 2026-06
Plain-language 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.
Who can participate
Age range
16 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion Criteria:
YA Participants
* Diagnosis of congenital adrenal hyperplasia (any subtype or severity)
* Age ≥16 years
* Active follow-up within the pediatric endocrinology clinic
* English-speaking
* Cognitively able to complete questionnaires with or without assistance
* Anticipated ability to participate in CAH-T visits during the study period Caregiver Participants
* Parent, guardian, or primary support person of an enrolled AYA participant Provider Participants
* Pediatric endocrinologists, nurse practitioners, or transition-related clinical staff involved in CAH care for at least 6 months
Exclusion Criteria:
* Significant cognitive impairment precluding participation
* Inability to complete study procedures
* Inability to provide informed consent/assent
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
assessment of CAH knowledge
Timeframe: at baseline, 6 months, and 12 month after initiation of healthcare transition readiness
2
Self-Management and Transition to Adulthood with Rx (Self-Management and Transition to Adulthood with Rx-parent) questionnaire regarding transtion readiness
Timeframe: at baseline, 6 months and after 12 month visit
3
Change in quality of life for patients with CAH
Timeframe: at baseline, and 6 and 12 month follow-up