The use of data is based on the German Transplantation Act (TPG). According to this legal framework, institutions and organizations pursuant to § 15f TPG (DSO, Eurotransplant, German Medical Association, Monitoring and Oversight Commission, transplant centers, G-BA and competent state authorities) may request data from the Transplantation Register. In addition, research institutions and scientific registries pursuant to § 15g TPG are entitled to request or apply for register data for scientific purposes.
Data requests are submitted via the Tx export portal. After registering in the portal, you can select the required datasets, choose the desired data format (anonymized or pseudonymized), and specify the purpose of use.
In the case of data requests pursuant to § 15g TPG, the necessary application documents (data use agreement, description of the purpose, declaration of conflicts of interest, and, if applicable, justification for the need for pseudonymized data) are provided for download after completing the request in the portal. These must be completed, signed, and submitted to the Transplantation Register Office (office@transplantations-register.de). The request is then reviewed by the register office and—depending on the procedure—by additional committees. After a positive decision, the data will be made available via the export portal.
Processing time depends on the type of data request:
Anonymized data: a few days
Requests pursuant to § 15f TPG: a few weeks
Applications pursuant to § 15g (2) TPG (pseudonymized data): 12 weeks (due to involvement of the advisory board)
No, the provision of data from the Transplantation Register is free of charge.
Where can I find support for submitting a data request and using the data?
The following documents are available to support you:
In addition, the Transplantation Register Office is happy to assist you with technical, methodological, or subject-specific questions before and during your project. Contact: office@transplantations-register.de.
The national standard dataset (BED) includes transplant-related data on organ donors, recipients, transplantation procedures and retrieved organs, allocation processes, and follow-up care. It therefore covers the entire process from donation and allocation to long-term follow-up of recipients.
Two datasets are distinguished: The historical dataset contains anonymized data from 2006 to 2016, which were retrospectively integrated into the register. The second dataset includes data from 2017 onwards, which are transmitted with patient consent and stored in pseudonymized form. Currently, this dataset covers the period from 2017 to 2022.
The data in the Transplantation Register are based on the national standard dataset (BED) and are structured according to subject-specific entities (e.g., donor, recipient, transplantation) and organized in separate data tables. Manual linkage between tables is possible using unique patient identifiers (anonymized or pseudonymized ET donor numbers, ET recipient numbers, ET transplantation numbers, DSO identifiers).
Dataset descriptions available on the Tx website provide detailed information on the variables included and support the selection of relevant data for research purposes.
Data are provided in structured, machine-readable formats. By default, data tables are delivered as CSV files; additionally, an SQL format is available for direct use in database systems.
Data quality is ensured through a multi-stage process combining technical and content-related checks. Already during data transmission to the Transplantation Register, automated plausibility and completeness checks are performed to identify inconsistent or implausible entries and report them back to the data providers.
In addition, both annual datasets and the overall dataset are validated with regard to completeness, coverage, and plausibility in order to continuously monitor data quality. Identified patterns or systematic deviations are analyzed and used to further develop reporting processes, validation rules, and technical specifications.
Anonymized data are modified in such a way that they can no longer be linked to a specific individual. Pseudonymized data, on the other hand, contain identifiers (pseudonyms) that allow internal linkage to a person; however, the key linking pseudonym and identity is stored separately and securely protected.
The historical dataset of the register contains fully anonymized data. Data from 2017 onwards are transmitted to the register in pseudonymized form. The pseudonymization process is carried out by the trusted third party (Tx trust center).
Data recipients can choose whether they require anonymized or pseudonymized data as part of their data request. In all cases, data are provided in compliance with applicable legal requirements, in particular the GDPR and the German Transplantation Act.