The Transplant Registry is a central database in which information on organ donations and transplantations is collected nationwide.
It is the only institution in Germany that brings together data on organ donations, transplantations, donors, and recipients. The registry currently comprises more than 80,000 datasets.
The Transplant Registry Office is the central organizational unit responsible for managing the transmitted transplant-related data.
Its tasks include the collection and secure storage of the data, the verification of accuracy and plausibility, and the provision of data to authorized parties.
To protect personal information, there is also an independent Trusted Third Party. There, personal data are pseudonymized before being transferred to the Transplant Registry Office.
The aim is to increase transparency in transplantation medicine, strengthen the quality of care, and further improve patient safety.
An overview of data use to date can be found here.
The collection of medical data is carried out by the transplant centers as part of the documentation for the allocation organization Eurotransplant (ET) and for quality assurance by the Federal Joint Committee (G-BA), as well as by the coordinating body Deutsche Stiftung Organtransplantation (DSO) as part of the coordination of organ donation.
Specifically, the three institutions DSO, ET, and the Institute for Quality Assurance and Transparency in Healthcare (IQTIG), on behalf of the G-BA, provide data.
Important: Your data are only transmitted to the Transplant Registry with your explicit consent.
Personal data are transmitted to the Trusted Third Party in the form of identifiers (ET recipient number, ET donor number, ET transplantation number; DSO identification number) and are pseudonymized there before being passed on to the registry.
Information such as name, address, or health insurance details are not transmitted.
The processing of data is carried out in strict compliance with data protection regulations and is subject to the supervision of the Federal Commissioner for Data Protection and Freedom of Information (BfDI).
All data are transmitted using strong encryption. Personal and identifiable data are encrypted by an independent Trusted Third Party.
Access to the data is granted exclusively to authorized individuals with appropriate authorization. Data are only disclosed to organizations and institutions that are authorized under the Transplantation Act (TPG).
As a person on the waiting list, a transplant recipient, or a living donor, you have the right to obtain information about the processing of your personal data.
For information regarding your request for access, please refer to the website of the Trusted Third Party. The Trusted Third Party can establish the link between your personal data and the pseudonym stored in the Transplant Registry. This procedure serves to protect your data.
Alternatively, you may contact the hospital or transplant center that collected your data directly in order to obtain information about the data processing.
You also have the right to withdraw your consent to the transfer of your data to the Transplant Registry.
From that point onward, no new data will be transmitted to the Transplant Registry.
However, data that have already been stored cannot be deleted retroactively.
The independent Trusted Third Party retrieves the information stored in pseudonymized form in the Transplant Registry and responds to your request.