The right to informational self-determination and the strict protection of sensitive patient data have top priority when setting up the register. The data of the organ recipients and living organ donors are only transmitted to the transplant registry with their express consent. The register will be under the supervision of the Federal Commissioner for Data Protection (BfDI).
In the long term, it should contribute, among other things, to further developing the waiting list criteria and the distribution of donor organs. Because it provides well-founded information about which organ recipient a donor organ is most likely to match. Linking the data can also provide information on how transplant centers can further improve their quality. It is also possible to apply for the use of data for scientific research purposes in the field of transplantation medicine.
The draft law stipulates that the self-governing partners (National Association of Statutory Health Insurance Funds, German Hospital Society and German Medical Association) contractually commission suitable bodies with the establishment and operation of a transplant registry and an independent trust center for the pseudonymization of personal data.
The transmission of the transplantation medical data to the transplantation registry will be based on a nationally standardized data set. This data set is being developed in parallel with the legislative process. On behalf of the Federal Ministry of Health, the Robert Koch Institute (RKI) has set up a working group for this purpose, in which experts from all relevant institutions are represented.
A specialist advisory board will be set up at the transplantation registry office to provide technical advice and support to both the registry office and the trustee.