With the transplantation register, data from deceased organ donors, organ recipients and living donors are summarized and linked nationwide for the first time. The law provides for the use of data in anonymous form that was collected from the various institutions up to 10 years before the law came into force. In the long term, the register should contribute, among other things, to the further development of the waiting list criteria and the distribution of donor organs. It is also possible to apply for the use of data for scientific research purposes in the field of transplantation medicine.
The right to informational self-determination and the strict protection of sensitive patient data are paramount. Therefore, the express consent of the organ recipient and the living organ donor is necessary for the transfer of their data to the transplant registry. In order to ensure that the registry data records are complete, the transplant registry is commissioned to check and report annually on the extent to which consent has been granted. The transplantation register will be under the supervision of the Federal Commissioner for Data Protection (BfDI).
The law stipulates that the self-governing partners (the National Association of Statutory Health Insurance Funds, the German Hospital Society and the German Medical Association) contractually commission suitable bodies to set up and operate a transplant registry and an independent trust center for the pseudonymization of personal data.