NAKO-ZDM working group

Mission:

The NAKO Health Study is the largest long-term population study in Germany. It is designed to run for 20-30 years and is organized and conducted by a network of German research institutions consisting of institutions of the Helmholtz Association, universities and the Leibniz Association. The aim of the study is to investigate the causes of widespread diseases such as cancer, diabetes, infectious diseases and heart attacks. As part of the study, 200,000 voluntary participants are regularly examined and interviewed in 18 study centers across Germany.

Our mission is to provide the best possible support for the NAKO Health Study and the 18 study centers through central data management (ZDM) and the central provision of web-based services and IT tools. The central data management enables efficient and standardized data collection, the assurance of data integrity and quality and the best possible implementation of all aspects of data protection and data security.

Tasks:

The NAKO-ZDM working group operates the NAKO Health Study Integration Center at the DKFZ in cooperation with the University Medical Center Greifswald. The Integration Center maintains the databases in which all study data of the NAKO Health Study are compiled and stored long-term. The division into two locations ensures a high level of data security and availability.

The Integration Centre also develops and operates central web-based software tools for the collection and processing of study data, which ensures efficient and standardized data collection and integration across all study centers and a large number and variety of data sources. The Integration Center maintains interfaces to all data-processing facilities of the NAKO. This includes, for example, the study's competence centers, which process complex data from specific subject areas, and the competence network for secondary and registry data, which requests and processes data from health insurance companies and cancer registries. Furthermore, the integration center implements central procedures for quality testing and assurance, processing and enrichment of data and provides data for internal quality assurance by NAKO experts.

The NAKO-ZDM working group is also part of the NAKO Health Study transfer office. The transfer office is responsible for the organization and implementation of data transfers to users of data and biosamples in accordance with the terms of use.

Last but not least, the WG NAKO-ZDM supports the users in the NAKO study centers in case of problems with data collection, advises internal NAKO experts as well as internal and external data users on questions regarding data and data structures and is represented in many NAKO committees in order to plan and accompany all new developments and projects regarding IT support, data management and data processing. 

The NAKO-ZDM working group relies on an interdisciplinary team of software developers, scientists and documentalists to implement its tasks.