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Details

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

CC CC00027

Hospital Main Campus

Stage N/A

Phase N/A

Disease Blood & Marrow Transplant (BMT), Hematologic Malignancy

Description

Description

  1. 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.
  2. 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.
  3. 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.
Inclusion Criteria

Inclusion Criteria

  1. Adult (≥ 18 years), or pediatric (≥2 years and < 18 years) allogeneic HCT recipient (related, unrelated, or CBU) at participating pilot study transplant centers.
  2. Signed informed consent form from adult patient or parent/guardian of pediatric patient.
  3. Patient must have a valid mailing address within the United States to receive QOL surveys.
  4. Ability to speak and read English.
  5. Patients with access to a telephone.
Exclusion Criteria

Exclusion Criteria

Exclusion Criteria Not Available