A Study of a Virtual Education-Based Transition Intervention to Improve Transition Readiness in Adolescent and Young Adults With Congenital Adrenal Hyperplasia
Congenital Adrenal Hyperplasia
About this trial
This is an interventional supportive care trial for Congenital Adrenal Hyperplasia focused on measuring Self-Paced, Interactive, Adrenal Biomarkers, Trxansition Index Score, Health Care Transition
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.
Sites / Locations
- National Institutes of Health Clinical CenterRecruiting
Arms of the Study
Arm 1
Arm 2
Other
No Intervention
1
2
Intervention Study Arm 1 participants will receive an approximately 11minute educational video on CAH that focuses on transitional goals (at baseline, 3 months, and 6 months. This will be done via a NIH approved webbased REDCap. Completion will be recorded.
Usual care Study Arm 2 participants will have their usual six-month CAH follow up to coincide with study visits at 0, 6 and 12 months. During their visit, study participants will receive standard care that includes self-injection teaching and sick day rules