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 the medical transplantation information of patients on the waiting list, organ recipients and organ donors. This includes information on the harvesting of the organ, as well as data on preservation, packaging, transport, among others. Furthermore, it includes quality assurance data as specified in the guidelines of the Joint Federal Committee.
Initially, anonymised data collected from the various institutions from January 1st 2006 to December 31th 2016 (legacy data) is submitted to the Transplant Registry. The data supplier encodes all data elements with a key generated by the independent trust office. The trust office retrieves the data and formally checks the delivery file. Once the data of all suppliers has been transmitted, the trust office consolidates the data and anonymises it.This new delivery data record is encrypted with the key of the Transplant Registry office and then transmitted. After additional checks, e.g. for plausibility, the Transplant Registry office fills the registry database with the legacy data.
For the new data delivery (data from January 1st 2017 and following), the delivery files are transferred to the registry in a serial procedure by the data suppliers via the independent trust office. Within a delivery file, data related to personal and medical transplantation information is handled as separate data elements. Data on personal information can only be decrypted by the independent trust office whereas data related to the medical transplantation information can only be decrypted by the Transplant Registry. The independent trust office replaces the personal data with a pseudonym, transmits it to the Transplant Registry office and subsequently deletes the delivery files. This ensures that the medical transplantation data is only processed and stored in a pseudonymised form within the Transplant Registry.
The transfer of any personal data of a patient on the waiting list, of an organ recipient or of a living donor can only permitted with explicit consent.
Each data transmission is encrypted and can only be decrypted by the data recipient.
The Transplant Registry is under the supervision of the Federal Commission for Data Protection and Freedom of Information (BfDI).