Virtual education to help young adults with congenital adrenal hyperplasia transition to adult care
A Feasibility Pilot Study of a Virtual Education-Based Transition Intervention to Improve Transition Readiness in Adolescent and Young Adults With Congenital Adrenal Hyperplasia.
This study is testing a virtual education program to help young adults with congenital adrenal hyperplasia learn how to manage their condition better as they move from pediatric to adult healthcare.
Quick facts
| Phase | Not applicable |
|---|---|
| Study type | Interventional |
| Enrollment | 20 (estimated) |
| Ages | 16 Years to 22 Years |
| Sex | All |
| Sponsor | National Institutes of Health Clinical Center (CC) NIH |
| Locations | 1 site (Bethesda, Maryland) |
| Trial ID | NCT05663320 on ClinicalTrials.gov |
What this trial studies
This study tests a virtual education-based intervention aimed at improving transition readiness for adolescents and young adults with congenital adrenal hyperplasia (CAH). Participants aged 16 to 22 will engage in a self-paced educational program designed to enhance their understanding and management of CAH as they transition from pediatric to adult healthcare. The study will assess the feasibility and preliminary effectiveness of this intervention through questionnaires and follow-up visits, comparing outcomes with those receiving usual care. The goal is to facilitate a smoother transition and improve health outcomes for these patients.
Who should consider this trial
Good fit: Ideal candidates are adolescents and young adults aged 16 to 22 who have been diagnosed with congenital adrenal hyperplasia and are enrolled in a specific natural history study.
Not a fit: Patients with significant medical or cognitive impairments that hinder participation in the trial may not benefit from this study.
Why it matters
Potential benefit: If successful, this intervention could significantly enhance the ability of young adults with CAH to manage their health care needs independently.
How similar studies have performed: While studies on health care transition for chronic illnesses exist, this specific virtual education approach is relatively novel and has not been extensively tested.
Eligibility criteria
Show full inclusion / exclusion 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.
Where this trial is running
Bethesda, Maryland
- National Institutes of Health Clinical Center — Bethesda, Maryland, United States (Recruiting)
Study contacts
- Principal investigator: Ruth W Parker, C.R.N.P. — National Institutes of Health Clinical Center (CC)
- Study coordinator: Ruth W Parker, C.R.N.P.
- Email: ruth.parker@nih.gov
- Phone: (301) 496-8533
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.