Actively Recruiting
Pediatric cGVHD Symptom Scale
Led by National Cancer Institute (NCI) · Updated on 2026-04-22
420
Participants Needed
17
Research Sites
378 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
Background: Some children/adolescents who have had a stem cell transplant live with chronic graft-versus-host-disease (cGVHD). cGVHD is a side effect of the transplant that can cause multiple bothersome symptoms and negatively affect a child/adolescent squality of daily life. The questionnaires that measure thesymptoms caused by cGVHD are designed for adults. Children/adolescents may not describe their symptoms in the same way. The goal of this research is to improve the way we measure how bothersome these symptoms are for children/adolescents living with cGVHD. Objective: To develop a questionnaire (The Pediatric cGHVD Symptom Scale) for children/adolescents living with cGVHD to identify the symptoms they are experiencing and describe how bothersome those symptoms are to them. An additional goal is to design a parent/guardian companion questionnaire that can be used to capture the symptom experiences of very young children who may not be able to complete a questionnaire. Eligibility: Children/adolescents ages 5-17 who are receiving treatment for cGVHD after a stem cell transplant, and their parent/guardian.. Design: This study consists of 2 projects. Children/adolescents with cGVHD and their parent/guardianparticipants will be grouped by the child/adolescent s age: 5-7, 8-12, and 13-17. In project 1, participants will complete an age-appropriate questionnaire about cGVHD symptoms. The questionnaire will ask about the child/adolescent s physical functioning and emotional well-being. The parent/guardian will out fill out a companion questionnaire online. The child/adolescent will then review their completed questionnaire during an interview with a researcher and will be asked whether the questions about their symptoms were difficult to understand. The parent/guardian and child/adolescent will then be interviewed together to further explore their responses to the questionnaires. Interviews will be done in person, by phone, and online. . Based on what is learned through these interviews, the wording of the questionnaire will be improved for better comprehension and ease of response. In project 2, participants will complete this revised questionnairefor their age group along with some other questionnaires that ask about quality of life. Both the child/adolescent and parent/guardian will fill out the questionnaires online at three separate time points. In both projects, children/adolescents with cGVHD and their parent/guardian participants will be grouped by the child/adolescent s age: 5-7, 8-12, and 13-17. ...
CONDITIONS
Official Title
Pediatric cGVHD Symptom Scale
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Children aged 5 to 17 years old (Project 1) or 8 to 17 years old (Project 2)
- Clinical diagnosis of chronic graft-versus-host disease (cGVHD) after allogeneic stem cell transplant
- Currently receiving systemic treatment for cGVHD or had systemic therapy tapered off within the past 12 months
- No evidence of malignant disease relapse, including molecular relapse and minimal residual disease
- Eligible caregiver proxy willing to participate in the study
- Parent or guardian able and willing to sign informed consent
- Ability to comprehend and speak English
- Adult caregivers (18 years or older) of eligible children who can provide informed consent and speak English
You will not qualify if you...
- Children judged by investigators to be too ill to participate
- Children whose cognitive ability would interfere with study procedures
AI-Screening
AI-Powered Screening
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Trial Site Locations
Total: 17 locations
1
Phoenix Children's Hospital
Phoenix, Arizona, United States, 85016
Actively Recruiting
2
City of Hope
Duarte, California, United States, 91010
Not Yet Recruiting
3
Children's Hospital Colorado (CHCO)
Aurora, Colorado, United States, 80045
Active, Not Recruiting
4
Children s National Medical Center (CNMC)
Washington D.C., District of Columbia, United States, 20010
Active, Not Recruiting
5
Children's Healthcare of Atlanta - Egleston Hospital
Atlanta, Georgia, United States, 30322
Active, Not Recruiting
6
Lurie Children's Hospital of Chicago
Chicago, Illinois, United States, 60611
Active, Not Recruiting
7
Johns Hopkins Hospital (JHH)
Baltimore, Maryland, United States, 21287
Active, Not Recruiting
8
National Institutes of Health Clinical Center
Bethesda, Maryland, United States, 20892
Active, Not Recruiting
9
University of Minnesota
Minneapolis, Minnesota, United States, 55455
Active, Not Recruiting
10
University of Pittsburgh - Children's Hospital of Pittsburgh
Pittsburgh, Pennsylvania, United States, 15224
Actively Recruiting
11
St. Jude Children s Research Hospital
Memphis, Tennessee, United States, 38105
Active, Not Recruiting
12
Texas Children's Hospital (TCH)-Baylor
Houston, Texas, United States, 77030
Active, Not Recruiting
13
The University of Texas MD Anderson Cancer Institute
Houston, Texas, United States, 77030
Active, Not Recruiting
14
Fred Hutchinson Cancer Center (FHCC)
Seattle, Washington, United States, 98109
Active, Not Recruiting
15
Children's Wisconsin
Milwaukee, Wisconsin, United States, 53226
Actively Recruiting
16
Hospital for Sick Children (SickKids)
Toronto, Canada
Active, Not Recruiting
17
Children's & Women's Health Centre of British Columbia (CWHC of BC)
Vancouver BC, Canada
Active, Not Recruiting
Research Team
L
Lori S Wiener, Ph.D.
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
6
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