A Study of a Virtual Education-Based Transition Intervention to Improve Transition Readiness in Adolescent and Young Adults With Congenital Adrenal Hyperplasia
Launched by NATIONAL INSTITUTES OF HEALTH CLINICAL CENTER (CC) · Dec 22, 2022
Trial Information
Current as of June 26, 2025
Recruiting
Keywords
ClinConnect Summary
This clinical trial is studying a new way to help young people with congenital adrenal hyperplasia (CAH) transition from pediatric to adult care. The researchers want to see if providing education through a short video online can help adolescents and young adults, aged 16 to 22, learn how to manage their condition more effectively as they grow older. Participants will be asked to fill out questionnaires about their knowledge of CAH, medication habits, and overall quality of life.
To participate, individuals must be diagnosed with CAH, already part of a related study, and have access to a computer or mobile device with internet. The trial involves three visits over the course of a year, where participants will receive education on self-care and take part in discussions about their health. Some participants will watch an 11-minute video focused on their goals, while others will receive standard education. This study aims to improve how young people manage their health and prepare for adult care.
Gender
ALL
Eligibility criteria
- * INCLUSION CRITERIA:
- In order to be eligible to participate in this study, an individual must meet all of the following criteria:
- • Provision of signed and dated informed assent or consent form.
- • Stated willingness to comply with all study procedures and availability for the duration of the study.
- • Patients between ages 16-22
- • Diagnosed with CAH and enrolled in the Natural History Study Protocol 06-CH-0011.
- • Ability to speak and comprehend English as this is a pilot study and the study intervention education video is currently only in English and requires validation before translation into other languages
- • Access to a computer/mobile device and the internet.
- EXCLUSION CRITERIA:
- An individual who meets any of the following criteria will be excluded from participation in this study:
- • Patients with significant medical or cognitive impairment(s) that may interfere with participating in trial.
- • Participants unable to participate in all aspects of this clinical trial.
About National Institutes Of Health Clinical Center (Cc)
The National Institutes of Health Clinical Center (CC) is the nation's largest hospital dedicated exclusively to clinical research, serving as a pivotal facility for advancing medical knowledge and innovative therapies. Located in Bethesda, Maryland, the Clinical Center provides a unique environment where patients have access to cutting-edge treatments and participate in groundbreaking clinical trials across a wide range of diseases. As a leader in translational research, the CC integrates patient care with scientific investigation, fostering collaboration among researchers, clinicians, and patients to accelerate the development of new interventions and improve health outcomes.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Bethesda, Maryland, United States
Patients applied
Trial Officials
Ruth W Parker, C.R.N.P.
Principal Investigator
National Institutes of Health Clinical Center (CC)
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported
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