Healthcare Transition Program for Congenital Adrenal Hyperplasia

This study is looking at a new program called the Comprehensive Adolescent Healthcare Transition (CAH-T) for young people with congenital adrenal hyperplasia (CAH), a lifelong hormone disorder. The program aims to help you learn how to manage your condition better as you move from children's to adult healthcare. Researchers want to see if the CAH-T program is practical and helpful, and if it improves your knowledge about CAH, your ability to manage your health, and your quality of life. The study plans to enroll 40 participants and is currently unclear about its recruitment status. You may be able to join if you are 16 years or older, have CAH, and are actively followed by a pediatric endocrinology clinic.

Study design
This is an observational study that plans to enroll 40 participants. It is evaluating a healthcare transition program.
What's involved
You would participate in CAH-T visits, with the first visit occurring about 3 months after enrollment. You will complete questionnaires at baseline, 6 months, and 12 months.
Compensation
Not stated in the trial record.
Follow-up
You will be followed for 12 months after starting the healthcare transition readiness program.

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NCT07611786

Development of Healthcare Transition for Patients With Congenital Adrenal Hyperplasia

Not Yet Recruiting
Not specifiedAges 16+Observational
University of Alabama at Birmingham
~40 participants
Updated 2026-08-21 on ClinicalTrials.gov
What's tested:exposure to healthcare transition protocol

At a glance

Recruiting sites
0 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
assessment of CAH knowledge
Measured over at baseline, 6 months, and 12 month after initiation of healthcare transition readiness
+2 more outcomes measured
Congenital Adrenal Hyperplasia

NCT07611786

Where you'd take part

This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • University of Alabama at Birmingham

    Birmingham, Alabamastudy coordinator listed

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

  • Christy Foster, MD · PRINCIPAL_INVESTIGATOR · University of Alabama at Birmingham

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Eligibility criteria

Inclusion

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

Significant cognitive impairment precluding participation
Inability to complete study procedures
Inability to provide informed consent/assent
  • assessment of CAH knowledgeat baseline, 6 months, and 12 month after initiation of healthcare transition readiness

    Brief survey of CAH knowledge with Congenital adrenal hyperplasia knowledge questionnaire looking at the treatment of the condition and the mechanism of congenital adrenal hyperplasia. Minimum score 0; Maximum score 44; with 0 indicating lack of knowledge of CAH

  • Self-Management and Transition to Adulthood with Rx (Self-Management and Transition to Adulthood with Rx-parent) questionnaire regarding transtion readinessat baseline, 6 months and after 12 month visit

    This questionnaire assesses patient's readiness for movement to adult healthcare. minimum score of 0, maximum score of 90. 0 indicating patient is not ready for movement to the adult healthcare system.

  • Change in quality of life for patients with CAHat baseline, and 6 and 12 month follow-up

    assessment of CAH quality of life with questionnaire (CAHQL). Scale from 0-100 with increasing scale indicating a higher quality of life.