The following institutions are obliged to transmit medical transplantation data to the transplant registry:
- coordinating body
- transplantation centres
- Joint Federal Committee
- Aftercare facilities and doctors in outpatient care
The data transmitted includes, among other things, the medical transplantation data of patients on the waiting list, organ recipients and donors, the organ collection data, preservation, packaging, labelling and transport and the quality assurance data specified in the guidelines of the Joint Federal Committee.
Firstly, anonymised data collected from the various institutions from January 1st 2006 to December 31th 2016 inclusive (old data) are entered in the transplantation register. To do this, the data provider codes all data elements with a key generated by the independent trust. The independent trust retrieves the data and formally checks the delivery file. Once the data of all suppliers have been transmitted, the independent trust consolidates the data and makes it anonymous. This new delivery data record is encrypted with the key of the transplant register office and transmitted to it. After further checks, for example for plausibility, the transplant registry office fills the register database with the old data.
In the new data delivery (data from January 1st 2017), the delivery files are transferred to the register in a serial procedure by the data suppliers via the independent trust. Within a delivery file, the directly personal and medical transplantation data are separate data elements. The personal data is encrypted for the independent trust and the medical transplantation data for the transplant registry. The independent trust replaces the directly personal data with a pseudonym, supplies it to the transplant register office and then deletes the files. This ensures that the medical transplantation data is only processed and stored pseudonymised in the transplant register.
The transfer of personal data of a patient on the waiting list, of an organ recipient or of a living donor is only permitted if express consent has been obtained.
Each data transmission is also encrypted and can only be decrypted by the data recipient.
The transplant Register will be under the supervision of the Federal Commission for Data Protection and Freedom of Information (BfDI).