The legislator expressly wants to promote research in the field of transplantation medicine. Therefore, according to § 15g Transplantation Act, it is possible to apply for the use of data for scientific research purposes in the field of transplantation medicine.
As a research institution, you submit your application for data provision to the Transplantation Registry Office (Agency). Describe your research project in the application procedure and specify the data you require. If a vote of an ethics committee is required, please attach this to the application. As a research institution, you submit your application for data provision to the TPG-sponsors (Central Association of Health Insurance Funds, German Medical Association and German Hospital Federation) in agreement with the Association of German private healthcare insurers after consulting the Advisory Board. The transplant registry will then inform you of the decision.
If the data transfer has been approved, sign a usage agreement with the transplant registry. The provision of anonymised (possibly pseudonymised) data without any provider or insurance information is encrypted using the electronic retrieval procedure.
In exceptional cases, service provider-identifying and cost unit-identifying data may also be transmitted. Approval is also granted by the TPG-sponsors. Scientific registers only receive anonymised data. The transplant registry shall publish an annual report on the data submitted.
Anonymised data collected locally from various institutions up to ten years before the law came into force are included in the transplant register in order to achieve results as quickly as possible for example on the further development of waiting list admission rules, organ and donor characterisation or on improving the quality of transplantation medical care and aftercare. This data can also be made available for research purposes on request. Simply contact the agency.