The legislator explicitly wants to promote research in the field of transplantation medicine. Therefore, according to § 15g Transplantation Act (TPG), it is possible to request or apply for data from the Transplantation Registry for scientific research purposes in the field of transplantation medicine.
In order to gain initial knowledge as quickly as possible, for example, for the further development of waiting list admission rules, for the further development of organ and donor characterization or for the improvement of quality in transplantation medical care and follow-up, anonymized data that were collected decentrally at various institutions up to ten years before the law came into force are included in the Transplantation Registry (§ 15e para. 8 TPG).
The transplant medical data according to § 15e para. 8 TPG (so-called legacy data) can be requested for research purposes and will be transmitted electronically by the Transplantation Registry after conclusion of a user agreement. For this purpose, the Transplantation Registry provides an online portal (https://export.transplantations-register.de).
For the transmission of anonymized transplantation medical data, the research center fills out the online form and selects the data required for the research project according to the data set description of the nationally standardized data set. In addition, it must be indicated whether service provider- and payer-identifying data are requested anonymized or pseudonymized.
The Transplantation Registry verifies the request for completeness and plausibility. In the case of requested pseudonymized service provider- and payer-identifying data, the TPG contracting authorities decide in agreement with the PKV association, depending on the stated research purpose, whether the request is granted. The Transplantation Registry Office informs the requestor of the decision.
The Transplantation Registry Office publishes an annual report on the submitted data.