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Data Sharing

In the spirit of facilitating data registration for centres, the EBMT can 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 made this request. The end result is that centres need to submit the same data only once, and can still fulfil their data provision commitment with other partners.

Data sharing details

The Data Sharing 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 in the future. 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 at the centre. At this point, for the service to the centre to be continued, the request needs to be renewed. 

To this end, a procedure is in place for Study Groups / Societies who wish to access multiple centre data from the EBMT Registry: 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 request form.  

A request to share data template, where the necessary information can be transmitted to the EBMT, can be downloaded below.

Sharing Agreements

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.

In addition to the National Registries, EBMT has agreements with the organizations that appear further down. If you would like your centre to participate in any of these agreements, please download, complete and forward the relevant form to the EBMT. 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.

 

National Registries

The National Registries are independent from the EBMT and have access to data from centres in their respective countries. These centres are either listed members of the National Registry or have requested explicitly that the EBMT share their data with the 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 applicable.

Below you can see the the National Registries with whom the Registry infrastructure is being shared. Click on the country for details.

Eurocord

Centres who wish to do so can request that the EBMT share data so that the Eurocord Registry can see data of patients that have received cord blood HSCT without the centre having to send them the data in a separate format. Please see the letter below for more information. To make this request, download, complete and either fax, or scan and email, the request form below to the Registry. The contact details are in the form.

Stem Cell Transplant for Immune Deficiencies in Europe (SCETIDE)

Centres who wish to do so can request that the EBMT share data so that the SCETIDE can see data of patients that have undergone an HSCT procedure for primary immune deficiencies or FELH without the centre having to send them the data in a separate format. For further information and to make this request, download, complete, and either fax, or scan and email, the request form below to the Registry. The contact details are in the form.

CIBMTR

IMPORTANT NOTICE: 5 June 2018

The transfer of data from EBMT to CIBMTR is temporarily suspended whilst a GDPR review is ongoing

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).

If you would like to request that the EBMT transfer these data to the CIBMTR: download, complete, and fax the request form below to the Registry. The contact details are in the form.

The EBMT cannot act on this request 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.

The transfer of data is done through electronic data transfer and the EBMT awaits for the CIBMTR to ask explicitly for a centre's data before forwarding it. If your centre has made the transfer request, and you want to know the status of your centre in this process, contact the CIBMTR directly.

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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