Center for International Blood and Marrow Transplant Research

On July 1, 2004, in pursuit of a mission to improve transplantation access and outcomes for patients, the CIBMTR was established. The new organization joined together the research programs of the National Marrow Donor Program (NMDP) and the International Bone Marrow Transplant Registry (IBMTR) at the Medical College of Wisconsin.

In 1972, just four years after the first successful hematopoietic cell transplantation (HCT), pioneers in the field of HCT realized the significance of what they were undertaking. Several of the pioneers in this evolving science also understood the importance of collaborating to better understand the data being generated at individual centers. Dr. Mortimer M. Bortin and several colleagues established the IBMTR at the Medical College of Wisconsin to do just that. Physicians in the field agreed to voluntarily contribute their patient data to this outcomes registry. At the time, there were only about 12 transplant centers and fewer than 50 patients per year worldwide receiving a transplant.

In 1986, the U.S. Navy established the National Bone Marrow Donor Registry with one full-time employee housed at the St. Paul, MN, American Red Cross and a sub-contract with the University of Minnesota for computer support and data management. The first donor search was processed in September 1987, and the first National Marrow Donor Program (NMDP)-facilitated transplant took place in December 1987. Again, the founders knew the critical nature of collecting outcomes data and conducting collaborative research to improve outcomes, requiring from that very first unrelated transplant that transplant centers report their patient outcomes to the NMDP.

Observational research is a core activity of CIBMTR. Investigators are invited to propose studies that utilize CIBMTR's large observational database. These research studies culminate in publications in peer-reviewed journals and move the field of hematopoietic cell transplantation (HCT) toward improved outcomes and higher quality of life. Since its inception in 1972, CIBMTR data and statistical support have resulted in more than 700 peer-reviewed publications addressing HCT. Studies are conducted within a Working Committee structure. They are guided by Co-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. MS biostatisticians coordinate Working Committee activities and participate in individual studies, with oversight provided by PhD biotatisticians. Investigators from around the world are currently participating in more than 250 CIBMTR studies.

Collected data can be accessed for patient care decisions, developing research studies, education, transplant center administrative needs, and CIBMTR research.

Every year, a variety of resources are developed from CIBMTR data, including publications, slide sets, Web resources, and more. Investigators, physicians, patients and others interested in hematopoeitic cell transplantation (HCT) outcomes can access these resources below. They collect outcomes data on every allogeneic transplantation performed in the U.S. (for the SCTOD, as required by U.S. law). U.S. transplant centers also voluntarily submit autologous transplantation data, and transplant centers worldwide voluntarily submit both autologous and allogeneic transplantation data. As a result, their clinical database now contains information on more than 330,000 transplant recipients.

CIBMTR supports investigators in conducting HCT observational studies. Data available for this research includes:

Baseline recipient data

• Diagnosis – disease sub-classification or histology, disease status at transplant, cytogenetics, molecular markers, pre-HCT disease treatments
• Demographic – socioeconomic information, gender, age, race/ethnicity
• Transplant procedure – HLA typing, conditioning regimen, graft source, mobilization regimen, graft manipulation
• Clinical – coexisting diseases and disorders, pre-HCT infections, HCT history

Baseline donor data

• Demographics
• HLA typing
• Infection disease markers
• Pre-donation CBC and differential
• Pre-donation toxicities
• Filgrastim administration

Follow-up recipient data Collected at 100 days, 6 months, and annually after HCT (biennially after year 6):

• Information collected about all recipients
  • Survival (and cause of death, when applicable)
  • Subsequent HCT or cellular therapy
  • Initial neutrophil and platelet recovery
  • Graft vs. Host Disease (acute and chronic) - severity and treatment status
  • New malignancy, lymphoproliferative, or myelopoliferative disease/disorder
  • Chimerism studies
  • Disease assessment at the time of best response to HCT
  • Post-HCT therapy
  • Relapse or progression post-HCT
  • Disease status at time of most recent assessment
• Additional information collected about "research-track" recipients
  • Growth factor and cytokine therapy
  • Hematologic findings at time of most recent assessment
  • Immune reconstitution
  • Engraftment syndrome
  • Graft vs. Host Disease (acute and chronic) - symptoms, prophylaxis, and treatment drugs
  • Infection prophylaxis
  • Infection
  • Organ function/impairments
  • Functional status

Follow-up donor data Collected at 2 days, 1 week and weekly until donor reports full recovery, then at 1 month, 6 months and annually after donation:

• Donor outcomes – post-donation CBC and differential, post-donation toxicities, adverse events
• Product analysis – cell counts, viability, volume

The NMDP Research Sample Repository contains blood samples from related and unrelated recipient/donor pairs, collected pre-HCT. These samples can be used for local research studies as well as for CIBMTR research studies.

According to the CIBMTR, the NMDP Research Sample Repository contains "approximately 2.6 million sample aliquots from more than 47,800 related and unrelated transplant recipient/donor (or cord blood) samples with complete, validated clinical outcome data from the CIBMTR Observational Database. The majority of the paired samples have complete high-resolution data available for HLA-A, B, C, DRB1/3/4/5, DQ and DP loci".[3] Sample Types Samples in the NMDP Research Sample Repository are stored as:

• Whole blood
• Cryo-preserved whole blood
• Plasma
• Blood spotted on filter paper
• Peripheral blood mononuclear cells (PBMC) viable and non-viable
• B-Lymphoblastoid cell lines (B-LCL) viable and non-viable
• Granulocytes
• Serum
• DNA
• Whole genome amplified DNA

CIBMTR provides trends, outcomes data and presentation graphics, develops post-transplant care guidelines and conducts meetings for education, science and training. The CIBMTR has published more than 500 peer-reviewed papers in the medical literature since 1972. The CIBMTR Reference Center offers a wide range of resources for investigators, physicians and patients—from published studies and statistical data to guidelines for transplant patients and their families.