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Protocol Details

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

This study is currently recruiting participants.

Summary | Eligibility | Citations | Contacts




Sponsoring Institute

National Cancer Institute (NCI)

Recruitment Detail

Type: Participants currently recruited/enrolled
Gender: Male & Female
Min Age: 5 Years
Max Age: N/A

Referral Letter Required


Population Exclusion(s)



Kid Donor;
Sibling Donor;
Natural History

Recruitment Keyword(s)



Transplant Donor

Investigational Drug(s)


Investigational Device(s)




Supporting Site

National Cancer Institute


Child and teen hematopoietic stem cell (HSC) donations are being used more and more. But there is little data showing the effects that HSC donation has on child and teen donors to their siblings. HSC donation has bad health-related quality-of-life (HRQoL) effects for about 20 percent of child and teen donors. Researchers want to learn more about what causes bad HRQoL. They hope to make better programs to assist at-risk donors and their families.


To learn more about how children, teens, and their families are affected by the HSC donation and transplant process.


Children ages 5-17 who will be having an HSC transplant from a sibling or unrelated donor, and their parents and siblings.


Participants will be screened with information such as their demographics, their medical history, and their medication history.

Participants will answer questions over the phone 4 times in a 1-year period: before the transplant, 1 month after the transplant, 6 months after the transplant, and 1 year after the transplant. They will answer questions about how they feel physically and emotionally. They will be asked about how they are doing in school. The questions will vary based on each participant s age. The phone calls will last about 10-30 minutes. Most of the questions are multiple choice. Participants can skip any questions they do not want to answer. They can also skip an entire interview.

Participants who are donating HSCs to their sibling will be asked extra questions. They will be asked about how they feel about being a donor. They will be asked how they feel physically after they donate.

Researchers will be given background data about the participants, such as age, race, and gender.

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-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 years old

-- Any child between 5 and 17 years old with a brother or sister 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

-For families with pediatric donors aged 5 to 17, at minimum, the donor child and one parent has consented/assented to participate.

-Donor or non-donor siblings live in the same household as the recipient at least half of the time

-Parents/caregivers must be able to consent and, if applicable,complete a phone interview in English or Spanish

-Able to consent/assent and complete a phone interview in English or Spanish

-Has access to a telephone

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Not Provided

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Principal Investigator

Referral Contact

For more information:

Lori Wiener, Ph.D.
National Cancer Institute (NCI)
National Institutes of Health
Building 10
Room 1-6466
10 Center Drive
Bethesda, Maryland 20892
(240) 760-6419

Lori Wiener, Ph.D.
National Cancer Institute (NCI)
National Institutes of Health
Building 10
Room 1-6466
10 Center Drive
Bethesda, Maryland 20892
(240) 760-6419

NCI Referral Office
National Institute of Health Clinical Center (CC), 9000 Rockville Pike, Bethesda, Maryland 20892, United States: NCI Clinical Trials Referral Office

Clinical Trials Number:


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