- About the Transplant RegistryCurrently, the transplant registry is the only central institution in Germany which collects data on organ donation, transplants, organ donors and recipients in one place. With the amendment of the German transplant law (TPG) which came into force on 1st November, 2016, the Federal Government wants to ensure greater patient safety, transparency and quality in transplantation medicine. By bundling data on organ donors and transplant patients in one registry, a reliable basis is created for further improving transplantation medicine and increasing patient safety in Germany. For example, the registry can provide valid information on which donor organ will be the best match for an organ recipient. Any medically relevant information is only entered into the Transplant Registry with consent of both the donor and the recipient. In addition, the information is stored without any direct link to a person. Information provided on organ donor cards is not being recorded. The Transplant Registry consists of an autonomous Transplant Registry office and an independent trust office. The office is set up for all operations related to the Registry. It is where all medical transplantation data is collected, stored, checked, created, transmitted and being made available. In the trust office, personal data is pseudonymised before it is transmitted to the Transplant Registry. The Transplant Registry is under the supervision of the Federal Commissioner for Data Protection and Freedom of Information.
- Advisory BoardThe advisory board supports the work of the Transplant Registry office and the independent trust office. A group of experts in the field of transplantation medicine advises the office on medical and scientific questions. The board officially proposes the nationally standardised data set, participates in its continous development and is involved in the determination of the procedural rules for data transfers. The members of the advisory belong to:
- AgencyThe Transplant Registry consists of an autonomous Transplant Registry office and an independent trust office. The office will be set up for all operations related to the Registry. The office is in charge of all organisational and administrative groundwork needed for the Transplant Registry to fulfill its legal tasks. The main tasks of the office are:
- Establishment and operation of the Transplant Registry including recording, integration and plausibility checks of data from different data sources into one register data base
- If necessary, requesting corrections or additions to the transmitted data via the trust office
- Preparation, logging and moderation of advisory board meetings
- Reporting to TPG contracting authorities
- Data transmission to the parties involved (e. g. coordinating body, German Medical Association (Bundesärztekammer), Federal Joint Committee (Gemeinsamer Bundesausschuss), transplant centres)
- Answering inquiries from affected persons and research institutions
- Public relations
- Data and PrivacyThe 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
- Independent Trust Office
When data is being transferred between the data suppliers and the registry, the independent trust office is put in between to pseudonymise the data. As a result, data related to organ donors and organ recipients is anonymised (from January 1st 2006 to December 31th 2016 inclusive – legacy data) or pseudonymised (data from January 1st 2017 with consent – new data) and will then be transmitted to the Transplant Registry.
The trust office is further responsible for the so-called de-pseudonymisation, if requested by those affected. Data-related responses from the Transplantation Registry to the data suppliers also go through the trust office.
In addition, the independent trust is responsible for merging and anonymising the legacy data.
The trust office is supported by the advisory board.
Contact the trust office:
- Persons concerned
As a living donor or organ recipient, you have the right to obtain information regarding the processing of your personal data by the Transplant Registry at any time.
For your request, please contact the independent trust office. Only they can establish a link between your personal data and the pseudonym stored in the Transplant Registry. This procedure serves to protect your data.
The independent trust will then request your pseudonymised information from the Transplant Registry and respond to your inquiry.
Contact the trust office:
- PressIf you would like further informationen of the transplant register or if you have questions or suggestions, please contact us. Our contact person will answer your inquiries as soon as possible. Contact person and coordinator for press inquiries: Stefanie Binder-Popov +49 341 98988-350 firstname.lastname@example.org
Data Validation Report
Transplantationsmedizinische Daten der Jahre 2006 - 2016 V1.4 | 23.07.2021
In accordance with § 15b Section 4 Number 3 TPG (German transplant law), the data transmitted to the Transplantation Registry for the years 2006 – 2016 (legacy data) was checked for plausibility, completeness and comprehensiveness. The results of the data validation are summarized in the data validation report. The report gives an overview of the scope and structure of the data (legacy data) stored in the Transplant Registry.
The legislator wants to promote research in the field of transplantation medicine. According to § 15g TPG (German transplant law), it is possible to request or apply for data from the Transplant Registry for scientific research purposes in the field of transplantation medicine.
In order quickly develop updated waiting list admission rules and improve the quality of transplantation medical care and follow-up procedures, anonymised data was collected at various institutions (e.g. ET, DSO). Data included in the Transplant Registry was stored decentrally up to ten years before the law came into force (§ 15e para. 8 TPG).
According to § 15e para. 8 TPG the transplant medical data (so-called legacy data from 2006 - 2016) can be requested for research purposes and will be transmitted electronically by the Transplant Registry after a user agreement has been concluded. For this purpose, the Transplant Registry provides an online portal (https://export.transplantations-register.de).
For the transmission of anonymised transplantation medical data, the research center has to fill out an online form and select the data required for the research project according to the data set description of the nationally standardised data set. In addition, it must be specified whether anonymised or pseudonymised data is being requested.
The Transplant Registry verifies the request for completeness and plausibility. In the case of a request for pseudonymised data, the TPG contracting authorities have to decide on whether or not the request will be granted. This happens in agreement with the PKV (association of private health insurance), depending on the research purpose. The Transplant Registry Office will inform the applicant about the decision.
The Transplant Registry Office publishes an annual report on the submitted data.
- Service Documents
Nationwide Standardised Dataset
The nationwide standardised data set (BED) was developed for the central aggregation and storage of data in the Transplant Registry. The version published in the Bundesanzeiger comprises the data that are to be submitted to the Transplant Registry. (German only)
BED 2022 (2021 – 2022) V2022.1 | 28.12.2021
BED 2020 (2017 – 2020) V2020.1 | 20.01.2022
BED Altdaten (2006 – 2016) V1.2.3 | 31.05.2019
Altdaten V1.4 | 17.07.2021
This specification serves to describe the Altdaten module of the transplant registry. The document covers: Overall process, delivery files, data set, Altdaten module. (German)
Neudatenübermittlung V1.10 | 19.10.2021
This specification serves to describe the transmission of Neudaten to the transplant registry. The document covers: Overall process data delivery, data update, data deletion, data set, delivery files, public key infrastructure, transplant registry interface description, transplant registry trust authority interface description, transplant registry trust authority REST client. (German)
Datenübermittlung durch das Register V1.7 | 08.09.2021
This specification serves to describe the data transmission by the transplant registry. The document covers: Data transmission from the Tx registry to data recipients, data transmission by the transplant registry, data extraction and preparation, anonymization and pseudonymization of export files. (German)
Registerdatenbank V1.5 | 15.07.2021
This specification serves to describe the registry database of the transplant registry. The document covers: Architecture of the registry database, technical data model, data set. (German)
Rules of Procedure
Verfahrensordnung V2.0 | 01.06.2021
The Rules of Procedure define the procedures for data transmission to the transplant registry and by the transplant registry as required by the Transplantationsregistergesetz (TPG). The Rules of Procedure are issued by the TPG-Auftraggeber (GKV-Spitzenverband, Bundesärztekammer and Deutsche Krankenhausgesellschaft) in agreement with the Verband der Privaten Krankenversicher. (German)
Manual Export Portal
Handbuch zum Tx-Exportportal V2.2 | 26.01.2022
The Tx-Exportportal is used to request or apply for and retrieve transplant medical data from the transplant registry. This user manual serves as a guide for independent use of the portal. (German)
Shortnames in the BED-DB
Shortnames V1.0 | 13.08.2021
The length of column names is limited in the SQL database on which the BED-DB is based for technical reasons. The BED element names are therefore replaced by so-called short names in the BED-DB. These short names also remain the names of the columns in the exported tables when the data is exported. The table provides an overview of the BED element names and the associated short names.
- Site NoticeThis website is operated by Gesundheitsforen Leipzig GmbH on behalf of TPG clients (German Medical Association, GKV Central Association, German Hospital Federation e. V. ). Contact: Transplant register office Gesundheitsforen Leipzig GmbH Hainstraße 16 04109 Leipzig T +49 341 98988-350 F +49 341 98988-9301 E email@example.com I www.transplantations-register.de Authorized managing director: Dipl.-Inform. (FH) Roland Nagel, Executive MBA (HSG) Dipl.-Winf. Axel Schmidt Court of Registration: Amtsgericht Leipzig HRB 25802 USt.-IdNr.: DE268809429 Responsible for content according to § 7 TMG: Dipl.-Inform. (FH) Roland Nagel, Executive MBA (HSG) Responsible for the journalistic-editorial part according to § 55 Abs. 2 RStV (Rundfunkstaatsvertrag): Martin Grohmann Gesundheitsforen Leipzig GmbH Hainstraße 16 04109 Leipzig T +49 341 98988-350 F +49 341 98988-9301 E firstname.lastname@example.org Disclaimer: The World Wide Web is a constantly changing medium. It is therefore impossible to collect all relevant information and make it available to our partners. We therefore make no claim to completeness, although we strive to be comprehensive. On our pages we make information available to you with the help of external links. We assume no liability for the content and accuracy of the information on these external sites. As a rule, we comment on the information of an external page. We make no claim to completeness of our short comments or our own research results.
- The German National Transplant Registry