Central structures

Central Office

The around 25 employees of the NAKO e.V. central office coordinate the German National Cohort (NAKO). The office is located in Heidelberg. You can find contacts to the staff here.

18 study centres throughout Germany take care of NAKO participants. You can find contacts to the study centres here.

The Integration Centre is responsible for central data management by bringing together all study data (except biosample information). It also provides tools for data collection for the research centres and tools for data preparation and quality assurance for the competence units. Due to the high availability requirements for data collection and for security reasons, the integration centre has two locations. The data are permanently mirrored. The Integration Centre works exclusively with pseudonymised study data.

  • Greifswald site:
    University Medicine Greifswald
    Institute for Community Medicine
    Department of Healthcare Epidemiology and Community Health
    NAKO working group
    Walter-Rathenau-Str. 11
    17475 Greifswald

  • Heidelberg site:
    German Cancer Research Centre
    Department Clinical Trial Office (M130)
    Im Neuenheimer Feld 280
    69120 Heidelberg

The transfer office has the function of providing the study data and biosamples from the German National Cohort (NAKO) for scientific use. Scientists can submit applications for use and access via the NAKO TransferHub.

The aim of the mortality follow-up is to establish whether all citizens contacted as part of the German National Cohort (NAKO) are still alive and to determine the place, time and cause of death of those who have died. The collection of this data is important because the duration of life, the time of year and day of death, the place of death and the causes of death are the most reliable criteria for making statements about the health and healthcare of each individual and of society as a whole.

The Mortality Follow-Up is managed by Prof. Dr Dr Ulrich Mueller at the Federal Institute for Population Research in Wiesbaden:

Federal Institute for Population Research
Friedrich-Ebert-Alle 4
65185 Wiesbaden

The Tumour Tissue Bank (Tumorgewebebank, TGB) of the German National Cohort (NAKO) is located in Heidelberg. Tissue samples from participants in the German National Cohort (NAKO) who were or are undergoing medical treatment for a tumour disease are collected centrally here. The stored tissue samples are residual material that is no longer required after the clinical-diagnostic examination has been completed. For this reason, no additional interventions or tissue removal are necessary for the participants.

Some of the tumour material is requested in the form of tissue blocks from the pathologies in Germany and managed centrally at the TGB. The TGB’s storage system ensures pseudonymised and quality-controlled archiving. This results in a large collection of tissue samples that can be used in the long term and, together with the study data from the German National Cohort (NAKO), are of great benefit for the realisation of research projects. The purpose of such scientific projects is to gain a better understanding of diseases and to create a diagnostic basis for the development of new therapies.

The secure and quality-assured storage and availability of biosamples, such as blood or sputum samples, is essential for answering a large number of research questions in the German National Cohort (NAKO). The biomaterials collected in the study centres are transported to the Central Biorepository on the grounds of the Helmholtz Centre in Munich. Here, samples are stored and later retrieved for research purposes in a fully automated -180°C storage system and in a semi-automated -80°C storage system.

Competence units are independently operating institutions of the German National Cohort (NAKO) that provide subject-specific support for data management. A competence unit has the task of preparing the complex unprocessed study data of a subject area in a standardised way for later scientific analysis during the ongoing data collection process and to provide the derived study variables for integration into the central study database.

There are currently competence units for the following topics:

  • 7-day accelerometry, 24-hour accelerometry
  • 24-hour sleep/ECG
  • 10-second resting ECG
  • Retinal photography
  • Secondary data
  • 3D echocardiography and abdominal fat
  • MRI Core (details below)
  • Secondary data (details below)

The standardised performance and consistent quality of MRI examinations is monitored and ensured by the MRI Competence Network. It is made up of four centres with the following main points of focus:

  • Coordination and training ( University Hospital Freiburg)
  • Quality assurance (Greifswald University Medical Centre)
  • Random results (Ruprecht-Karls-University Heidelberg)
  • MRI data management (Fraunhofer MEVIS Bremen) 

To collect secondary and register data, existing data sources and information are queried and collated. These can be diagnoses from GPs and specialists, but also data from registers such as the cancer register. The Secondary Data Competence Unit works as a competence network at three locations, known as nodes:

  • Leibniz Institute for Prevention Research and Epidemiology, BIPS in Bremen
  • Otto von Guericke University Magdeburg
  • German Cancer Research Centre, Heidelberg

The Competence Network Secondary and Registry Data has the task of making the various secondary and registry data from the study participants available for NAKO e.V.. To this end, the Competence Network contacts the following organisations:

  • Statutory health insurers (GKV)
  • Private health insurers (PKV)
  • Central Institute for Statutory Health Insurance Physicians in Germany (ZI)
  • German Federal Pension Insurance (DRV)
  • Individual pension insurance providers Institute for Employment Research (IAB) of the Federal Employment Agency
  • Epidemiological Cancer Registry (EKR)
  • Clinical Cancer Registry (KKR)

The Independent Trusted Third Party (Treuhandstelle, THS) has the task of centrally managing the personal identifying data, the consents and the majority of pseudonyms, as well as coordinating the implementation of the revocation of study participation. It is also involved in the central retrieval of secondary and registry data, in the implementation of the follow-up and in the communication of incidental findings.

The Trusted Third Party is operated by the institution:

Trusted Third Party of the University Medicine Greifswald 
Ellernholzstraße 1-2 
17487 Greifswald

The Independent Trusted Third Party is organisationally, personnel-wise, spatially and technically independent of other units of the Central Data Management.

Quality assurance (QA) is carried out by the internal quality management (Zentrales Qualitätsmanagement, ZQM). ZQM checks the creation, documentation, distribution and maintenance of quality objectives, standard operating procedures (SOPs) and other QA documents, accompanies training courses and certifications and carries out regular observations and data analyses as well as process audits.

The NAKO Environmental Data Unit (EDU) collects and harmonises spatial environmental data available throughout Germany (e.g. air quality, meteorology, noise, land cover, deprivation) and assigns them to NAKO participants based on their place of residence for an individual exposure assessment.

Here you can find more information about the Environmental Data Unit (EDU)

The data protection concept describes the measures for data protection and IT security. Each institution involved in the German National Cohort (NAKO) ensures that the data collection and handling of the data is carried out in accordance with the data protection concept. Data processing is carried out in accordance with the General Data Protection Regulation (GDPR). The data protection concept of the German National Cohort (NAKO) is continuously coordinated with the responsible supervisory authority, the Federal Data Protection Commissioner for Data Protection and Freedom of Information (BfDI), and is supported by the BfDI in an advisory capacity.