There is currently no central authority in Germany that collects data on organ donation, transplants, donors and recipients.
With the amendment of the Transplantation Act, which came into force on November 1st 2016, the Federal Government wants to ensure greater patient safety, transparency and quality in transplantation medicine. By combining donor and transplant patient data in one register, a reliable basis is created for further improving transplantation medicine and increasing patient safety in Germany. For example, the registry can provide well-founded information on which donor organ would be best suited for which organ recipient.
The medically relevant information is only entered into the transplant register with the consent of both the donor and the recipient. In addition, they are stored in such a way that they do not allow any direct references to the persons. Information on the organ donor card is not recorded.
The transplant register consists of an autonomous transplant register office and an independent trust. An agency will be set up to operate the transplant registry. Being the central authority it collects, stores, checks, creates and makes available the transmitted medical transplantation data. In the trust centre, personal data is pseudonymised before it is transmitted to the transplant registry. The transplant register is under the supervision of the Federal Commissioner for Data Protection and Freedom of Information.