CGD Clinical Trial
Official title:
Evaluating the Transition From Pediatric to Adult Care Among Adolescents With Chronic Granulomatous Disease
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.
Children with chronic illnesses are thriving well into adulthood due to ongoing medical
advances. Many healthy and typically developing 18-year-olds should be able to manage a
transition from pediatric to adult care, but this transition can be challenging for
adolescents with chronic illness. A poor transition to adult care can result in medical,
social and educational issues for patients, families and the medical team. At issue are
questions of independence and self-management: are young adult patients prepared to travel to
NIH alone? Are they prepared to speak with physicians about their disease process and
medications? Are they ready to give informed consent for studies in which they have been
participating?
The National Institute of Allergy and Infectious Diseases (NIAID) at the National Institutes
of Health (NIH) has several hundred adolescents enrolled in clinical trials, many of whom
rely on NIH providers for specialized care. No formal program exists to assist these patients
in the transition from pediatric to adult care. Pediatric inpatients are admitted to the
adult inpatient unit when they turn 18 with little knowledge of the policy differences
between the units.
The investigators propose a retrospective exploratory descriptive study to (a) identify and
describe experiences that young adults found to enable or hinder their transition and (b)
explore these patients ideas for enhancing the transition process. A semi-structured
questionnaire administered by phone or face to face to approximately 40 young adults with
chronic granulomatous disease (CGD) will gather qualitative and quantitative information
about the use of inpatient and outpatient services at the NIH Clinical Center prior to and
since the subjects 18th birthdays. Data will be used to develop a program to help NIAID
pediatric patients with CGD transition successfully to adult care.
;
| Status | Clinical Trial | Phase | |
|---|---|---|---|
| Completed |
NCT01953016 -
Participation in a Research Registry for Immune Disorders
|
||
| Not yet recruiting |
NCT05546775 -
Immunological Profile and Clinical Characteristics of Children Diagnosed With Chronic Granulomatous Disease
|
||
| Recruiting |
NCT05600907 -
Study to Assess the Use of JSP191 in Matched Unrelated Donor Transplantation for Chronic Granulomatous Disease (CGD)
|
Early Phase 1 |