Evaluating the Transition From Pediatric to Adult Care Among Adolescents With Chronic Granulomatous Disease

Completed

Conditions studied: CGD

In brief

Background: People who get chronic illnesses as children are living longer. When they turn 18, they switch from pediatric care to adult care. This can be a difficult change. Chronic Granulomatous Disease (CGD) is an inherited disease. It causes long-term, repeated infections. People with CGD are usually diagnosed when they are very young children. Researchers want to find out more about how young people with CGD handle the change to adult care. What they learn may make this easier for people with CGD in the future. Objective: \- To identify what helped or hurt young adults with CGD as they went from pediatric to adult care. Eligibility: \- Adults with CGD who were 18 24 years old between January 2011 and February 2014. Design: * Participants will already be enrolled in NIH studies. * Eligible people will get materials in the mail. They will get a letter with study information, an interview questionnaire, and an information sheet. * Researchers will call participants 1 week after the packets are sent. They will talk about the study and find out if the person wants to join. * An interview will be completed immediately or scheduled for the future. The interview will take about 45 minutes. The researcher will ask the participant about their disease. They will also ask about travel to NIH, being an outpatient or inpatient there, and legal documents. * Researchers may contact the subjects again by phone if they need more information at any point during the study.

Key facts

Study ID
NCT02233036
Run by
National Institute of Allergy and Infectious Diseases (NIAID)
People needed
33
Starts
2014-03-26
Expected to finish
2017-01-10
Last updated by the study team
2018-04-05

Who can join

Age: 18 and older, up to 26. Sex: any. Healthy volunteers: not accepted.

Where it is running

Full record on ClinicalTrials.gov

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