In the spirit of facilitating data registration for centres, the EBMT will enter into data sharing agreements with organisations to whom centres are separately submitting similar data. The agreement will allow these organisations to access data already submitted by the centres to the EBMT, provided the centres have given their permission. The end result is that centres need to submit the same data only once, and still fulfil their data provision commitment with other partners.
The service is available to all centres that are members of the EBMT. While currently this service is free, the EBMT reserves the
right to charge organisations for its implementation and maintenance. No charge will be made to the centres.
Requests made by centres are only valid for 5 years or until there is a new Principal
Investigator in the centre. At this point, for the service to the centre to be continued, the
request needs to be renewed.
To this purpose, a procedure is in place for Study Groups / Societies who wish to access multiple centre data from the EBMT Registry by which the EBMT will create a virtual registry for that group. In order to populate the virtual registry with the appropriate centre data, we require that the Principal Investigator of each centre who wants to take advantage of this service signs a consent form.
A consent form template, where the necessary information can be transmitted to the EBMT can be downloaded using the following link: Request form for the EBMT to allow centre data to be seen by other organisations.
With whom is the EBMT currently sharing data
National Registries are a type of organisation with whom the EBMT has been sharing the registry infrastructure for many years in a special partnership which has been very fruitful for all.
For other organisations, please consult the sharing agreements currently in place.