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The EBMT Patient Registry

The EBMT Registry, established in 1974, is the backbone of the EBMT’s research and educational activities. As of 2018, the Registry has acquired data on over half a million patients given a haematopoietic stem cell transplantation (HSCT) procedure. The purpose of the Registry is to provide a pool of data to EBMT members to perform studies, assess epidemiological trends, and ultimately improve patients’ lives.

Learn more about The Registry

The Registry contains patient clinical data, including aspects of the diagnosis and disease, first-line treatments, HSCT- or cell-therapy-associated procedures, transplant type, donor type, stem cell source, complications and outcome. 

The population covered are patients who have undergone a haematopoietic stem cell transplantation (HSCT) procedure; patients with bone marrow failures receiving immunosuppressive therapies; and patients receiving non-haematopoietic cell therapies. Patients are followed up indefinitely. Basic donor info is included with these procedures and donor follow-up data can be entered by the transplant centre (or Donor Registry for unrelated).

All Registry studies are performed under the supervision of the EBMT Working Parties. 

In order to retain Full EBMT Membership status, EBMT centres must report all consecutive hematopoietic stem cell transplants each year.

Download a detailed description of how the Registry functions below.

First-time users

If you are an EBMT Member but have never used the Registry before, or if you need support, visit our How to Use the Registry page.

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The Transplant Activity Survey

Besides the Patient Registry, the EBMT has, since 1990, annually collected numbers of patients treated with a haematopoietic stem cell transplant (HSCT) according to indication, donor type and stem cell source. This data is submitted by and available to EBMT members.

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EBMT Registry

Members receive information about co-operative studies and results of EBMT research projects and have access to the EBMT Registry

Become a member of the EBMT

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The personal data provided will be processed according to the General Data Protection Regulation (GDPR 2016/679 ) and incorporated to a file property of EBMT which will be allocated in the EEA (European Economic Area) or in countries that are provided with the same level of protection for privacy such as countries that adhere to EU-US and Swiss-US Privacy Shield Frameworks.
Data Subjects have the right of access to his or her data and the right to rectification of any inaccurate or incomplete personal data. The Data Subject also has the right to withdraw consent, this wish will be respected, and the personal will no longer be made available. If the processing operation is unlawful the Data Subject has the right to request deletion of that data. Please write to data.protection@ebmt.org