The EBMT maintains a patient database known as the EBMT Registry. The Registry goes back to the beginning of the 1970’s and contains patient clinical data including aspects of the diagnosis, first line treatments, HSCT or cell therapy associated procedures, complications and outcome.
The population covered are patients who have undergone an 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.
The data is reported by centres performing any of the above treatments. There are no restrictions regarding centres that can report data except those required by the law on patient consent and data confidentiality.
The purpose of the Registry is to provide a pool of data to perform retrospective studies, assess epidemiological trends, or prepare prospective trials. These are all performed under the supervision of the EBMT Working parties and the EBMT assumes that centres providing data give their consent for data to be used in this way. Anybody who wants to run studies using the EBMT Registry should submit a preliminary protocol to the Working Party that is more suited to the study objectives.
For more detailed information on the Registry, click here to see the “EBMT Registry Function” document. The document is mandatory reading for all those wishing to access data in the Registry.
For information on how the data is being used in research, see the Research pages.