Identifying Predictors of Poor Health-Related Quality-of-Life Among Pediatric Hematopoietic Stem Cell Donors
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|ClinicalTrials.gov Identifier: NCT03718546|
Recruitment Status : Recruiting
First Posted : October 24, 2018
Last Update Posted : November 10, 2022
|Condition or disease|
|Quality of Life|
|Study Type :||Observational|
|Estimated Enrollment :||1876 participants|
|Official Title:||Identifying Predictors of Poor Health-Related Quality-of-Life Among Pediatric Hematopoietic Stem Cell Donors|
|Actual Study Start Date :||April 3, 2019|
|Estimated Primary Completion Date :||June 2023|
|Estimated Study Completion Date :||June 2024|
Sibling pediatric donors
Donors who are donating to a sibling
Sibling recipients and caregivers
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) [ Time Frame: 1 year ]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.
- 1 year post-donation [ Time Frame: 1 year ]To identify and examine donor HRQoL trajectories from pre- through 1 year post-donation.
- Donor characteristics [ Time Frame: 1 year ]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.
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03718546
|Contact: Brandan Butler, B.A.||firstname.lastname@example.org|
|Contact: Lisa Ericksonemail@example.com|
|Principal Investigator:||Galen Switzer, Ph.D||University of Pittsburgh|