An observational study in Quality of Life, sponsored by Center for International Blood and Marrow Transplant Research. Completed at 31 sites in United States. Open to participants aged 5 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2025-03-18.
Sponsored by Center for International Blood and Marrow Transplant Research · Observational
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.
There is limited data to show the effects that donation has on pediatric donors to their siblings. There is widespread agreement that it is critical to investigate the medical and psychosocial aspects of sibling pediatric HSC donation for multiple reasons including (a) the vulnerability of the pediatric population undergoing donation, (b) increasing use of pediatric HSC donation as a therapeutic option, (c) evidence that \~20% of pediatric HSC donors experience clinically important HRQoL deficits, and (d) the impact that improved understanding of factors predicting poor HRQoL will have on our ability to develop guidelines and/or interventions for assisting at-risk donors/families. The proposed study will help 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.
Center for International Blood and Marrow Transplant Research is the lead sponsor of 30 studies on the registry; 7 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Pediatric donors, their recipients and caregivers, non-donor siblings from the donor-recipient families, and non-donor siblings of patients receiving unrelated transplants.
Participants must fall into one of the following categories:
Be willing and able to provide signed informed consent:
Exclusion Criteria:
Unable to consent/assent or complete a phone interview in English
Donors who are donating to a sibling
Recipients who are receiving a transplant from a sibling
From the donor-recipient families
Of patients receiving unrelated transplants
A matched sample
Parent/caregiver of study participating donor.
HRQoL (Health Related Quality of Life)
To longitudinally and quantitatively describe the HRQoL of a diverse nation-wide cohort of sibling pediatric Hematopoietic Stem Cell (HSC) donors (Peripheral Blood Stem Cell or Bone Marrow) and to compare their HRQoL to that of (1) healthy non-donor sibling from the same family, (2) siblings of children with similar diseases who receive alternate treatments (e.g., unrelated cord blood transplants), and (3) healthy age, gender, and race/ethnicity-matched controls.
Time frame: 1 year
1 year post-donation
To identify and examine donor HRQoL trajectories from pre- through 1 year post-donation.
Time frame: 1 year
Donor characteristics
To determine which donor characteristics (e.g., demographic, psychosocial, and donation-related), recipient characteristics (e.g., recipient disease, transplant complications and outcomes), family characteristics (e.g., composition, cohesiveness, stress), and transplant center characteristics (e.g., presence of a donor advocate) most strongly predict membership in trajectory classes with poor HRQoL among donors.
Time frame: 1 year
Plan to share: No
No publications or documents are linked to this record.
This study is completed, as verified in Mar 2025. You cannot join it, but the record below documents what was studied.
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Center for International Blood and Marrow Transplant Research