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Center for International Blood and Marrow Transplant Research

Clinical Outcomes Research / Working Committees

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Collaborating for life-saving research

CIBMTR answers clinically important questions using its Research Database, Scientific Working Committees, other cellular and gene therapy initiatives, patient-reported outcomes, and collaboration with research partners.

Clinical outcomes research is a core activity of CIBMTR. Investigators are invited to propose studies that utilize the CIBMTR's large Research Database. These studies culminate in publications in peer-reviewed journals and move the field of hematopoietic cell transplantation (HCT) and cellular therapy toward improved outcomes and higher quality of life. Since its inception in 1972, CIBMTR data and statistical support have resulted in more than 1,800 publications addressing HCT and other cellular therapies.

The Clinical Outcomes Research Program includes retrospective studies and prospective studies utilizing the CIBMTR Research Database. Working in collaboration with the cellular therapy community, the CIBMTR Clinical Outcomes Research Program facilitates a broad portfolio of studies through Working Committees and other study teams.

 

Scientific Working Committees

Working Committees shape the observational research that leads to most of CIBMTR's publications. Through focused committees, volunteer members propose, design, and implement studies. Working Committee studies are guided by Chairs who are experts in the relevant field and by Scientific Directors who are experienced transplant physicians with MS degrees in biostatistics or related fields. Statisticians coordinate Working Committee activities and participate in individual studies, and Statistical Directors provide oversight. Investigators from around the world are currently participating in more than 100 Working Committee studies. 

Working Committee Membership

  • Membership is open to anyone willing to take an active role in developing and completing studies that involve CIBMTR data or resources. We encourage participation from US and international transplant centers.
  • To join a Working Committee, visit the committee page or email CIBMTRStatsOps@mcw.edu
  • Learn more about each of the Working Committees by clicking on each of the links below

Opportunities for Involvement

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Stem Cell Therapeutic Outcomes Database (SCTOD)

CIBMTR administers the SCTOD contract for the Health Resources and Services Administration (HRSA)-sponsored C.W. Bill Young Cell Transplantation Program (CWBYCTP). For the SCTOD, CIBMTR tracks and analyzes data for all allogeneic transplants performed in the US and transplants performed globally with products from the US.

Center-Specific Volumes and Survival Analysis  

CIBMTR provides HRSA with the annual volume of transplants performed at each center, which is posted on the CWBYCTP website. CIBMTR also performs a center-specific survival analysis evaluating one-year survival rates among US centers for transplants from related and unrelated donors.

Center Outcomes Forums

CIBMTR has conducted Center Outcomes Forums to engage relevant stakeholders in the center-specific outcomes reporting process.

For more information about the SCTOD, visit the SCTOD page. 

Adoptive Cellular Therapies (ACT)

In addition to receiving data on transplant recipients, CIBMTR receives data about patients who received other adoptive cellular therapies. Most activity is focused on the use of chimeric antigen receptor (CAR)-T cells for hematologic cancers. CIBMTR receives these data via a suite of CTED forms and continues to work with international registries to review and harmonize data collection globally.

Patient-Reported Outcomes

CIBMTR collects patient-reported outcomes data using an electronic patient-reported outcomes (ePRO) system. The ePRO system incorporates a user-friendly interface in Qualtrics, automated tracking and alerting functionality, and PROMIS measures via computer logic to focus on questions relevant to each individual patient.

For more information, visit the Patient-Reported Outcomes (PRO) Data Collection page.

Gene Therapy

CIBMTR also collects data in the gene therapy arena to serve the research community. The CIBMTR Gene Therapy Working Group collaborated with an external task force comprised of national gene therapy experts to determine how to best leverage the CIBMTR infrastructure to efficiently collect data for long-term follow-up of patients undergoing an autologous HCT using a genetically modified product. CIBMTR now has a Gene Therapy Product form and Post-transplant Gene Therapy Persistence form. In addition, the leukodystrophies, thalassemia, and sickle cell disease-specific forms have all been updated given the evolving landscape of gene therapy.

Cure Sickle Cell Support

Launched in 2018 by the National Heart, Lung, and Blood Institute, the Cure Sickle Cell Initiative builds a community of patients, advocates, researchers, and scientists to accelerate promising genetic therapies to cure sickle cell disease. Since 2019, CIBMTR has worked with the Cure Sickle Cell Data Consortium to build a research data ecosystem designed to support investigator-initiated collaborative research. US HCT data received by CIBMTR for sickle cell disease are now available in the National Center for Biotechnology Information database of genotypes and phenotypes for public use.

International Initiatives

CIBMTR continues to strengthen its collaborations with centers around the world as well as national and international registries. A major focus is enhancing data alignment and exchange, particularly through the harmonization of data collection. CIBMTR investigators also partner on research studies, and CIBMTR staff members mentor and train colleagues across the globe.