A Study of a Virtual Education-Based Transition Intervention to Improve Transition Readiness in Adolescent and Young Adults With Congenital Adrenal Hyperplasia
NCT05663320 · Status: WITHDRAWN · Phase: NA · Type: INTERVENTIONAL
Last updated 2025-12-10
Summary
Background:
Children with congenital adrenal hyperplasia (CAH) can survive well into adulthood with proper treatment. But the change from pediatric to adult care can be challenging. Many people with CAH need extra support as they learn to take control of their own health care needs. Researchers have studied how people respond to different types of patient education. Now researchers want to find out if virtual education, via computer, is a good way to teach people how to manage CAH as they become adults.
Objective:
To test a virtual method of delivering patient education to adolescents and young adults with CAH.
Eligibility:
Adolescents and young adults aged 16 to 22 years who have CAH. They must already be enrolled in Natural History Study Protocol 06-CH-0011.
Design:
Participants may take part in the study remotely; they may also come to the clinic. They will have 3 visits in 1 year.
Participants will complete questionnaires. Topics will include what they know about CAH; whether they remember to take their medications on their own; and whether they schedule their own appointments. They will be asked about their quality of life. They will be asked about their physical and emotional health.
All participants will be taught how to care for themselves. The participants will be divided into 2 groups. Some will watch an 11-minute video on CAH that focuses on their goals as they become adults. The others will receive standard education.
After 6 months, participants will receive CAH education again.
After 12 months, participants will repeat the questionnaires from their first visit.
Conditions
- Congenital Adrenal Hyperplasia
Interventions
- OTHER
-
virtual educational based transition intervention self-paced
study intervention is a standardized, virtual educational video on CAH that will be delivered self-paced
Sponsors & Collaborators
-
National Institutes of Health Clinical Center (CC)
lead NIH
Principal Investigators
-
Ruth W Parker, C.R.N.P. · National Institutes of Health Clinical Center (CC)
Study Design
- Allocation
- RANDOMIZED
- Purpose
- SUPPORTIVE_CARE
- Masking
- SINGLE
- Model
- SINGLE_GROUP
Eligibility
- Min Age
- 16 Years
- Max Age
- 22 Years
- Sex
- ALL
- Healthy Volunteers
- No
Timeline & Regulatory
- Start
- 2025-12-09
- Primary Completion
- 2025-12-09
- Completion
- 2025-12-09
Countries
- United States
Study Locations
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