Data collection & GDPR

Eurotransplant is mandated by eight countries in Europe to perform matching of deceased donor organs to patients on the waiting list. For this purpose donor hospitals and organizations, tissue typing laboratories and transplant hospitals in Eurotransplant member states collect and provide data for Eurotransplant. These data are mandatory and contain crucial information in order to match donor organs to the most suitable patients on the waiting list.

When registered on this waiting list, patients are asked to approve to (to ‘consent’) of this registration and the delivery of their data to Eurotransplant via an informed consent form. Each hospital has its own content in this form. However mostly in this form patients (and in case of living donation also the living donors) are informed amongst others about all aspects of the procedures for registration on the waiting list, the process and risks of the transplantation. They are also asked by their physician to express their consent for the use of their data for other purposes like e.g. scientific research or exchange of their data with official partners within the community of Eurotransplant. The choice of the patient is administered in the patient’s file at Eurotransplant.

Outcome of organ allocation

All data provided to Eurotransplant are stored in the secured Eurotransplant database. Next to the mandatory allocation related data, Eurotransplant voluntarily collects data on the outcome of transplanted grafts and of the health situation of recipients, the so called follow up data.

As mentioned above, the supply of follow up data is not mandatory. The staff of the Eurotransplant Registry Department tries to collect these data by means of a web-based Registry application.

Despite the fact that these follow up data are voluntarily completed by the centers, they are a crucial fundament to answer scientific questions as to what happens to patients after they have received a donor organ. How many of them survive? When were they last medically examined? How is the organ functioning and how is the health situation of the recipient after transplantation?

Eurotransplant Registry

All data collected by Eurotransplant play a key role in refining organ allocation aiming at the continuous improvement of the match between organ and recipient. This refinement aims to improve outcome after transplantation. Which type of recipients stand the best chance of survival with which type of organs? Is there a difference in outcome in age groups or with genders? The Eurotransplant Registry provides as complete as possible datasets to biostatisticians, doctors and medical researchers to facilitate analyses and innovation in organ matching, donation and transplantation. 

Privacy regulations

Eurotransplant receives many requests for data. These include for example data on how many transplants were performed, how many patients with a specific disease were listed or transplanted, etc. At all times Eurotransplant respects the privacy aspects defined by the European Data Protection Regulation (GDPR) which came into effect on May 25, 2018. Eurotransplant never provides names or other data that might lead to the identification of a specific donor or patient.

For any questions or you might have related to the processing of data by Eurotransplant in the framework of the GDPR you can send an e-mail to privacy@eurotransplant.org.

For detailed information on the General Data Protection Regulation (GDPR) please visit https://gdpr-info.eu/.

Security policies