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

NCT02233036 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 33

Last updated 2018-04-05

No results posted yet for this study

Summary

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.

Conditions

  • CGD

Sponsors & Collaborators

  • National Institute of Allergy and Infectious Diseases (NIAID)

    lead NIH

Principal Investigators

  • Patricia R Driscoll, R.N. · National Institute of Allergy and Infectious Diseases (NIAID)

Eligibility

Min Age
18 Years
Max Age
26 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2014-03-26
Primary Completion
2016-01-11
Completion
2017-01-10

Countries

  • United States

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT02233036 on ClinicalTrials.gov