Identifying Predictors of Poor Health-Related Quality-of-Life Among Pediatric Hematopoietic Stem Cell Donors

Completed

Conditions studied: Quality of Life

In brief

To compare donors to their non-donor counterparts and healthy controls as well as to generate trajectory classes based on longitudinal patterns of donor HRQoL and identify predictors of poor donor HRQoL.

Key facts

Study ID

NCT03718546

Run by

Center for International Blood and Marrow Transplant Research

People needed

754

Starts

2019-04-03

Expected to finish

2024-10-08

Last updated by the study team

2025-03-18

Who can join

Age: 5 and older. Sex: any. Healthy volunteers: accepted.

You may qualify if…

• Participants must fall into one of the following categories:
• Donor between the age of 5 and 17 who is donating to a sibling
• Parent/caregiver of study participating donor
• Recipient sibling aged 5 to 17 of study participating donor
• Any of the donor's non-donor/non-recipient siblings between 5 and 17
• Any child between 5 and 17 with a brother or sister (also between 5 and 17) receiving a transplant from an unrelated source
• Be willing and able to provide signed informed consent:
• Adults must give consent for their children's and, if applicable, their own participation
• Assent will be obtained in accordance with guidelines at the participant's transplant institution
• Be willing and able to respond to psychological assessment questions
• Must be the donor's first donation
• Recipient must consent to the CIBMTR research database

You may not qualify if…

• For families with pediatric donors aged 5 to 17, at minimum, the donor child and/or one parent must consent/assent to participation. If that minimum is not met, the family will be excluded
• Donor or non-donor siblings who do not live in the same household as the recipient at lease half of the time
• Unable to consent/assent or complete a phone interview in English
• Parents may consent/assent in Spanish
• No access to a telephone

Where it is running

• University of Alabama at Birmingham — Birmingham, Alabama, United States
• Phoenix Children's Hospital — Phoenix, Arizona, United States
• City of Hope — Duarte, California, United States
• Loma Linda University — Loma Linda, California, United States
• Children's Hospital of Los Angeles — Los Angeles, California, United States
• Rady Children's Hospital San Diego — San Diego, California, United States
• University of California San Francisco Medical Center — San Francisco, California, United States
• Children's Hospital Colorado — Aurora, Colorado, United States
• Yale New Haven Hospital — New Haven, Connecticut, United States
• Children's National Medical Center — Washington D.C., District of Columbia, United States
• Niklaus Children's Hospital — Miami, Florida, United States
• Children's Healthcare of Atlanta — Atlanta, Georgia, United States
• University of Louisville Hospital - James Brown Cancer Center — Louisville, Kentucky, United States
• Children's Hospital of New Orleans/LSUHSC — New Orleans, Louisiana, United States
• NIH/NCI — Bethesda, Maryland, United States
• University of Michigan — Ann Arbor, Michigan, United States
• Spectrum Health — Grand Rapids, Michigan, United States
• The Children's Mercy Hospitals and Clinics — Kansas City, Missouri, United States
• St. Louis Children's Hospital — St Louis, Missouri, United States
• Memorial Sloan-Kettering Cancer Center — New York, New York, United States
• Westchester Medical Center — New York, New York, United States
• University of North Carolina Hospitals — Chapel Hill, North Carolina, United States
• Duke University Medical Center — Durham, North Carolina, United States
• Children's Hospital of Philadelphia — Philadelphia, Pennsylvania, United States
• Medical University of South Carolina — Charleston, South Carolina, United States

Full record on ClinicalTrials.gov

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