myNAKO – Participants portal
Below you find more detailed information on the German National Cohort (NAKO) and current research projects.
Scientific use of the NAKO data
The German National Cohort (NAKO) is a major scientific resource that should be used as widely as possible in order to investigate the development of diseases and the maintenance of health as extensively as possible. We take the protection and security of your data and biosamples very seriously. The data and biosamples are therefore used exclusively for research purposes. Research institutions, universities or research-based companies can submit applications for the use of data and biosamples. For this reason, many different scientists work with data from the German National Cohort (NAKO). All scientific analyses must be officially applied for and are then reviewed by an expert committee of the German National Cohort (NAKO), the so-called Use & Access Committee (UAC). Projects that fulfil the purpose of the German National Cohort (NAKO), and that have been positively accepted by the UAC must be reviewed and approved by the NAKO e.V. board.
All previously approved research projects with project title and participating institutions can be found here:
Cooperation with research institutions abroad
NAKO e. V. makes data and biological samples from the German National Cohort (NAKO) available to researchers from institutions that comply with European Union data protection standards in accordance with the General Data Protection Regulation (GDPR) for scientific projects. All projects and applications are reviewed by the UAC and the NAKO e.V. Board of Directors and must be approved by both bodies before data or biosamples are released.
We handle your data and biosamples responsibly and ensure that they are only transferred to countries with an appropriate level of data protection. This applies to countries within the European Union and a small number of other countries.
Standardised data protection guidelines apply within the European Union, in particular the European General Data Protection Regulation (GDPR). The GDPR currently applies in all EU member states.
In principle, NAKO data can also be transferred to countries outside the EU if the European Commission has determined an adequate level of data protection in the respective countries or if NAKO has agreed binding agreements with the research partners abroad to guarantee an adequate level of protection. The European Commission has currently established an adequate level of data protection for the following countries (adequacy decision): Andorra, Argentina, Faroe Islands, Guernsey, Isle of Man, Israel, Japan, Jersey, New Zealand, Switzerland, South Korea, Uruguay. In the case of adequacy decisions with restrictions – currently Canada, United States of America (USA only in relation to organisations participating in the EU-US Data Privacy Framework) and United Kingdom – it will be examined on a case-by-case basis whether the planned transfer of data and biosamples falls within the scope of the adequacy decision.
A continuously updated list of all countries with an adequacy decision can be found on the European Commission’s website.
Data storage
NAKO e.V. collects data and biosamples on the health of study participants. The medical results data are collected from the participant as part of a comprehensive examination at one of NAKO’s 18 study centres.
The personal identifying data will be stored in the participant management of the study centre responsible for you for the duration of your participation in the study and in the Independent Trustee Office of the German National Cohort (NAKO).
Your study data will be stored exclusively under your personal participation number, without personal identifying data.
Genetic Data
Genetic information is key to better understanding health and the development of disease. Genes control the body’s biological processes from birth to old age. In future, genetic data will be used to conduct even more detailed research into which biological and lifestyle factors influence disease – and how prevention can be implemented at an early stage.
Genetic data can show, among other things, why some people react more strongly to certain environmental factors or have a higher risk of certain diseases. It helps to identify connections between genetics, nutrition, exercise and metabolic processes. This provides a basis for developing more targeted prevention strategies and identifying health risks at an early stage.
How is genetic information obtained?
In the German National Cohort (NAKO), information about genes, gene products and metabolic products is obtained from the participants’ biological samples. These research methods are collectively referred to as “omics”.
Two key genetic analysis methods are currently used in NAKO: genotyping and whole genome sequencing (WGS).
- Genotyping involves the targeted examination of individual genetic building blocks that can provide information about individual biological characteristics.
- Whole genome sequencing (WGS) captures the entire genome – i.e. the complete genetic blueprint of a human being. This data makes it possible to analyse the interaction between genetics, lifestyle and environment more comprehensively than ever before.
Together, both methods provide a valuable scientific basis for new findings in prevention and health research.
Responsible handling of sensitive data
The handling of genetic information is particularly sensitive. For special protection, genetic and all other omics data are stored separately in a special data infrastructure. One such infrastructure is the German Human Genome Phenome Archive (GHGA). Genetic data is stored in the GHGA infrastructure on local servers at up to seven locations: at the German Cancer Research Centre (DKFZ) in Heidelberg, at the University of Tübingen, at the Technical Universities in Munich and Dresden (TUM and TUD), at the University of Cologne and in Berlin, where the infrastructure is jointly operated by the Max Delbrück Centre (MDC) and the Berlin Institute of Health (BIH) at the Charité.
By storing genetic data separately in this special infrastructure, the genetic data is particularly well protected against re-identification. The data is stored separately from your personally identifiable data in the Independent Trust Agency and separately from your examination data, including analysis results and derived data, in the Central Data Management of the German National Cohort (NAKO).
Only registered users may utilise the genetic data exclusively for research purposes – and only after careful review and approval of their application.
When and how will the data be available?
Access to NAKO genetic data is planned to be available from 2027 onwards as part of reviewed and approved research projects.
The genetic data will be made available via a specially secured environment: a Secure Processing Environment (SPR), also known as a Trusted Research Environment (TRE). This protected computer environment is being developed in collaboration with the German Human Genome Phenome Archive (GHGA). Researchers will only be allowed to work with the data within this system in order to comply with the highest standards of data security.
New ways of providing data
Groundbreaking innovations that improve our health arise where different perspectives, expertise and resources come together. Close cooperation with national and international scientists creates the best conditions for translating the findings of the German National Cohort (NAKO) into practical applications.
All collaborations involving NAKO e.V. – whether national or international, and whether with academic institutions or research-oriented companies – are subject to the highest standards in the review, approval and implementation of research projects and the associated data sets from the German National Cohort (NAKO). The protection of sensitive data is paramount.
Cooperation is essential in order to:
- to make the most of the potential of NAKO,
- Promoting innovation in healthcare,
- accelerate knowledge transfer and
- putting scientific findings into practice more quickly.
TRE-pilot project
As part of a pilot phase for a so-called Trusted Research Environment (TRE), NAKO e.V. wants to take advantage of current technical developments and test new, secure ways of providing data. At the same time, these new methods will be used to support scientific questions posed by research-based companies.
The TRE pilot project is being set up on behalf of NAKO e.V. by its cooperation partner Honic and is contractually regulated in accordance with the high requirements and guidelines of NAKO e.V. In September 2025, researchers were invited to submit data usage applications for the pilot project via the NAKO application portal TransferHub (www.nako.de/transferhub).
A Trusted Research Environment (TRE) is a secure and controlled environment in which researchers can work with sensitive data. It protects the privacy of study participants and ensures a high level of data security. Authorised persons can use the TRE to process and analyse verified and approved data without this data ever leaving the environment.
Unlike existing secure data processing options in Germany, TREs aim to provide a uniform, legally compliant and protected platform for national and international research collaborations.
The term Secure Processing Environment (SPE) is often used as a synonym for TRE. Both refer to a protected computer-based environment for secure data processing.
This is how cooperation for data use in the TRE pilot phase works:
- All proposed projects are carefully reviewed by the Use and Access Committee and the NAKO e.V. Executive Board with regard to their scientific value, social added value and legal requirements.
- Once a project for a clearly defined data set has been approved, a contract is concluded that sets out the framework conditions for data use.
- No fee is charged for the use of the requested NAKO data. Fees are only charged for the services provided by the TRE provider, in particular for the provision of the TRE, for technical support and for consulting services within the scope of the projects. These costs are communicated during the application process and borne by the applicants.
- The approved data sets will be made available exclusively within the TRE in the pilot project.
- All data remains entirely within the TRE system. Only verified results may be exported.
- Upon completion of the project, the provided data sets will be deleted from the TRE.
This ensures that NAKO data is handled securely and in a controlled manner within the TRE:
We adhere to the international guidelines of the so-called “Five Safes Framework”.
Safe People: Only appropriately authorised and trained individuals who are bound by data protection regulations are granted access to data.
Safe Projects: The use of data must serve a legitimate, ethically acceptable research purpose that is verifiable and meaningful.
Safe Settings: Data is provided in protected, controlled technical environments to prevent unauthorised access.
Safe Data: The data itself is processed (e.g. anonymised) in such a way that the risk of identification is minimised.Safe Outputs: Research results and evaluations are checked before publication to ensure that no confidential information is disclosed.
Further information
What is the Five Safes framework? – UK Data Service
Do you have any questions? Please feel free to contact us.: geschaeftsstelle@nako.de
Withdrawal
Thank you for your participation in the German National Cohort (NAKO). Your contribution in the form of data and time enables researchers to investigate the development, frequency and causes of a variety of life-changing diseases.
Of course, you have the option of revoking your declaration of consent to participate in the German National Cohort (NAKO) at any time, either in part or in full, without giving reasons and without incurring any disadvantages.
You will find detailed information on revocation in the participation information under point 16 (PDF in German).
We invite you to talk to us at any time about any concerns you may have. Please get in touch with your contact person at the NAKO study centres. You can also obtain a withdrawal form there.
Contact
NAKO Central Office
Am Taubenfeld 21/2
69123 Heidelberg
Germany
geschaeftsstelle@nako.de
NAKO Study Centres
The individual study centres and their contact addresses can be found here.
Responsible for data processing
NAKO e.V.
Am Taubenfeld 21/2
69123 Heidelberg
Germany
Data protection officer
datenschutz süd GmbH
Wörthstraße 15
97082 Würzburg
Germany
datenschutz@nako.de
Latest news from NAKO
Do you have questions or comments?
Send us an email at geschaeftsstelle@nako.de or talk to your contact person at the Study Centres.