This study is currently recruiting participants.
Number
000411-CC
Sponsoring Institute
National Institutes of Health Clinical Center (CC)
Recruitment Detail
Type: Participants currently recruited/enrolled Gender: Male & Female Min Age: 16 Years Max Age: 22 Years
Referral Letter Required
Yes
Population Exclusion(s)
Non-English Speaking
Keywords
Self-Paced; Interactive; Adrenal Biomarkers; Trxansition Index Score; Health Care Transition
Recruitment Keyword(s)
None
Condition(s)
Congenital Adrenal Hyperplasia
Investigational Drug(s)
Investigational Device(s)
Intervention(s)
Other: virtual educational based transition intervention self-paced
Supporting Site
NIH Clinical Center
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.
--Back to Top--
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.
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.
Principal Investigator
Referral Contact
For more information: