If you would like your centre to participate in any of the agreements below, please download, complete and forward to the EBMT the relevant form. All must be signed by the Principal Investigator (PI) of the centre as s/he appears in the membership list. We will check the name of the PI against the EBMT membership list and reject requests that do not comply with this requirement.
Centres who wish to do so, can give permission to the Eurocord Registry to see data of patients that have received cord blood HSCT without having to send them the data in a separate format.
Please see accompanying letter. To give permission please click on the permission request form for the EBMT to share patient outcome data with the Eurocord Registry
Stem Cell Transplant for Immune Deficiencies in Europe (SCETIDE) CIC 7427
Centres who wish to do so, can give permission to the SCETIDE to see data of patients that have undergone an HSCT procedure for primary immune deficiencies or FELH without having to send them the data in a separate format.
Click on the permission request form for the EBMT to share patient outcome data with the SCETIDE to see further information and access the consent form.
British Bone Marrow Registry (BBMR)
The BBMR is conducting a long term study following patients that have received donations from this donor registry.
NOTE: Currently the transfer of data is only partial
while the CIBMTR and EBMT implement and test procedures for electronic data
transfer. Some data is already moving, but it is not being done for all centres that have requested it and does not cover all time points as yet.To know the status of your centre in this process, contact the CIBMTR directly.
For centres that submit data to the CIBMTR, the EBMT has an agreement with the CIBMTR to transfer MED-A and MED-A follow up so that the centre does not have to send them the data in a separate format. (MED-A data is equivalent to the CIBMTR’s TED data).
Click on Request to share Data with CIBMTR if you would like to request that the EBMT transfer these data to the CIBMTR. Forms must be signed by the Principal Investigator (PI) of the centre.
Please note that the EBMT cannot act on this permission until you have contractual clearance with the CIBMTR. It is the centre’s responsibility to ensure that the patient consent to data transfer covers data being sent outside of the European Union or European Economic Area.
Please contact the CIBMTR directly if you require further information.