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.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
Development of Healthcare Transition for Patients With Congenital Adrenal Hyperplasia
At a glance
Conditions
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.
Study leadership
- Christy Foster, MD · PRINCIPAL_INVESTIGATOR · University of Alabama at Birmingham
Who to contact
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Inclusion
Exclusion
What this trial measures
- 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.