EBMT shares EBMT Registry data with a number of companies, study groups, societies and organisations for data submission and data retrieval/research purposes, upon agreement and in line with GDPR requirements.
Data sharing for data submission purposes
In the spirit of facilitating data registration for centres, the EBMT can enter into data sharing agreements with organisations that centres collaborate with, that are willing to submit data to the EBMT on behalf of those centres. Such agreements also allow these organisations to access data already submitted by the centres to the EBMT, provided that the centres have made this request. The end result is that centres need to submit the same data only once, and can still fulfil their data provision commitments with other partners.
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. The National Registries are independent from the EBMT and have access to data from centres in their respective countries and jurisdiction. These centres are either listed members of the National Registry or have requested explicitly that the EBMT share their data with a National Registry.
Most of these National Registries actively collaborate with the EBMT Registry in data collection and training of Data Managers. A small number of National Registries enter data on behalf of their centres. Please contact your National Registry if you require more information on their activities.
Another type of data sharing is the sharing of EBMT Registry patient records between centres where a patient had treatments. More information on this can be found in the Data Submission page under the section 'Access to patients given a prior treatment in another centre'.
Below you can see the countries where National Registries and EBMT are actively collaborating.
Data sharing for data retrieval/research purposes
A procedure is in place for study groups/societies/organisations that wish to access multiple centre data from the EBMT Registry for research purposes. The Data Sharing service is available to all centres that are members of the EBMT, and wish to share their data for research purposes. While currently this service is free, the EBMT reserves the right to charge study groups/societies/organisations for this service in the future. Centres will not be charged for this service.
Data sharing for research purposes is time-limited and subject to explicit request and approval by a centre’s PI as well as subject to approval by the EBMT. Please contact the Registry Helpdesk on firstname.lastname@example.org with your request for data sharing. An appropriate request form will be forwarded to you, depending on the type of data sharing requested.
Centres can request that the EBMT share data of their patients who have received cord blood HCT with EuroCord. More information on this can be found in the document below. Centres that want to share data with EuroCord can request this by completing fully and correctly the form below. All completed forms must be emailed to email@example.com
Stem Cell Transplant for Immune Deficiencies in Europe (SCETIDE)
Centres can request that the EBMT share data of their patients who have undergone an HCT procedure for primary immune deficiencies or FELH with SCETIDE. Centres that want to share data with SCETIDE can request this by completing fully and correctly the form below. All completed forms must be emailed to firstname.lastname@example.org