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Center for International Blood and Marrow Transplant Research

Data Collection

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Data files with a doctor

Collecting Data

CIBMTR has collected health outcomes data worldwide for 50+ years, resulting in an Outcomes Database with information from 700,000+ patients. Committed to collecting a broad spectrum of data to serve the research community, CIBMTR collects data related to:

CIBMTR collects data for 30,000+ new patients annually as well as a continually increasing volume of follow-up data on previously reported recipients and donors.

Hematopoietic Cell Transplantation (HCT)

CIBMTR collects HCT data at two levels: A Transplant Essential Data (TED) level and a Comprehensive Report Form (CRF) level. TED-level data comprise an internationally accepted standard data set that contains the key clinical variables for all consecutive transplant recipients. CRF-level data capture additional detail regarding patient, disease, and treatment-related data.

Adoptive Cellular Therapies

In addition to receiving data on transplant recipients, CIBMTR receives data about patients who received adoptive cellular therapies. CIBMTR continues to expand and optimize its Outcomes Database to appropriately capture data on new cell and gene therapy products and interact with cell and gene therapy manufacturers.

  • CAR-T. Most cellular therapy activity is focused on the use of chimeric antigen receptor (CAR)-T cells for hematologic cancers. CIBMTR collects these data via a suite of CTED forms and continues to work with international registries to review and harmonize data collection globally.
  • Gene Therapy. CIBMTR collects gene therapy data on CIBMTR’s Gene Therapy Product form and Post-Transplant Gene Therapy Persistence form. In 2024, CIBMTR updated its thalassemia, adrenoleukodystrophy, and sickle cell disease-specific forms in line with commercial approval of gene therapies for these indications, and it launched new forms to collect transfusions and bone marrow evaluations following gene therapy.

Patient-Reported Outcomes (PRO)

CIBMTR collects PRO data directly from patients. These data include quality of life, biologic and physiologic variables, symptom status, functional and financial status, and general health perceptions.

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

 

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Participating Centers

More than 300 centers currently share their data with CIBMTR. These centers are located throughout the US and around the world.

Data Collection Forms

View CIBMTR’s data collection forms and Forms Instruction Manual, including new and revised form previews and retired forms manuals.

Data Manuals & Guides

Access CIBMTR’s Forms Instruction Manual, Audit Guide, Data Management Guide, and Reporting Application Guide.

Data Quality

Learn how CIBMTR ensures timely and accurate data submission through its data quality, continuous process improvement, and audit programs.

Communications

View updates and announcements published in weekly eBlast communications and memos. To register to receive communications from Data Operations, email CIBMTRDataOps@mcw.edu.

Support & Resources

Learn about CIBMTR’s reimbursement to centers for completing data collection forms and other resources, including CIBMTR Center Support.