Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| Name | Class |
|---|---|
| University of Pittsburgh | OTHER |
Not provided
Not provided
Not provided
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.
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Sibling pediatric donors | Donors who are donating to a sibling | ||
| Sibling recipients and caregivers | Recipients who are receiving a transplant from a sibling | ||
| Non-donor sibling | From the donor-recipient families | ||
| Non-donor siblings | Of patients receiving unrelated transplants | ||
| Healthy comparison | A matched sample | ||
| Parents | Parent/caregiver of study participating donor. |
Not provided
| Measure | Description | Time Frame |
|---|---|---|
| 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. | 1 year |
| Measure | Description | Time Frame |
|---|---|---|
| 1 year post-donation | To identify and examine donor HRQoL trajectories from pre- through 1 year post-donation. | 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. |
Not provided
Inclusion Criteria:
Participants must fall into one of the following categories:
Be willing and able to provide signed informed consent:
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
Exclusion Criteria:
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
No access to a telephone
Not provided
Not provided
Not provided
Pediatric donors, their recipients and caregivers, non-donor siblings from the donor-recipient families, and non-donor siblings of patients receiving unrelated transplants.
Not provided
| Name | Affiliation | Role |
|---|---|---|
| Galen Switzer, Ph.D | University of Pittsburgh | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of Alabama at Birmingham | Birmingham | Alabama | 35233 | United States | ||
| Phoenix Children's Hospital |
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| 1 year |
| Phoenix |
| Arizona |
| 85016 |
| United States |
| City of Hope | Duarte | California | 91010 | United States |
| Loma Linda University | Loma Linda | California | 92354 | United States |
| Children's Hospital of Los Angeles | Los Angeles | California | 90027 | United States |
| Rady Children's Hospital San Diego | San Diego | California | 92123 | United States |
| University of California San Francisco Medical Center | San Francisco | California | 94143 | United States |
| Children's Hospital Colorado | Aurora | Colorado | 80045 | United States |
| Yale New Haven Hospital | New Haven | Connecticut | 06510 | United States |
| Children's National Medical Center | Washington D.C. | District of Columbia | 20910 | United States |
| Niklaus Children's Hospital | Miami | Florida | 33155 | United States |
| Children's Healthcare of Atlanta | Atlanta | Georgia | 30322 | United States |
| University of Louisville Hospital - James Brown Cancer Center | Louisville | Kentucky | 40202 | United States |
| Children's Hospital of New Orleans/LSUHSC | New Orleans | Louisiana | 70118 | United States |
| NIH/NCI | Bethesda | Maryland | 20892 | United States |
| University of Michigan | Ann Arbor | Michigan | 48109 | United States |
| Spectrum Health | Grand Rapids | Michigan | 49503 | United States |
| The Children's Mercy Hospitals and Clinics | Kansas City | Missouri | 64108 | United States |
| St. Louis Children's Hospital | St Louis | Missouri | 63110 | United States |
| Memorial Sloan-Kettering Cancer Center | New York | New York | 10065 | United States |
| Westchester Medical Center | New York | New York | 10595 | United States |
| University of North Carolina Hospitals | Chapel Hill | North Carolina | 27599 | United States |
| Duke University Medical Center | Durham | North Carolina | 27705 | United States |
| Children's Hospital of Philadelphia | Philadelphia | Pennsylvania | 19104 | United States |
| Medical University of South Carolina | Charleston | South Carolina | 29425 | United States |
| Vanderbilt University Medical Center | Nashville | Tennessee | 37203 | United States |
| Children's Health (formerly Children's Medical Center Dallas) | Dallas | Texas | 75235 | United States |
| Methodist Healthcare System of San Antonio/Texas Transplant Institute | San Antonio | Texas | 78229 | United States |
| University of Utah Blood and Marrow Transplant Program - Pediatrics | Salt Lake City | Utah | 84112 | United States |
| Fred Hutchinson Cancer Research Center | Seattle | Washington | 98109 | United States |
| Children's Hospital of Wisconsin | Milwaukee | Wisconsin | 53226 | United States |