Title (Adult/Pediatric) Pilot study to assess the feasibility of collecting quality of life data in collaboration with the Stem Cell Therapeutic Outcomes Database
IRB CBMT 1Z10
Hospital Main Campus
Disease Blood & Marrow Transplant (BMT), Hematologic Malignancy
- To evaluate the feasibility of prospectively collecting QOL data on a large cohort of allogeneic HCT recipients in multiple centers. This will be assessed primarily through participation and retention rates for the study.
- To determine whether the processes, procedures and systems put in place at a limited number of transplant centers, as well as within the CIBMTR Survey Research Group and Statistical Center, are adequate and feasible to collect high quality data for a QOL data collection system for the Stem Cell Therapeutic Outcomes Database, a component of the C.W. Bill Young Cell Transplantation Program.
- To describe and correlate the patient-reported QOL data with the clinical and demographic data captured on either the CIBMTR Transplant Essential Data Forms (TED) or the CIBMTR comprehensive research report forms.
- Adult (≥ 18 years), or pediatric (≥2 years and < 18 years) allogeneic HCT recipient (related, unrelated, or CBU) at participating pilot study transplant centers.
- Signed informed consent form from adult patient or parent/guardian of pediatric patient.
- Patient must have a valid mailing address within the United States to receive QOL surveys.
- Ability to speak and read English.
- Patients with access to a telephone.