KORA-gen is a new resource for genetic epidemiological studies. The objective is to provide access to DNA samples and phenotypic data from about 18,000 participants with mortality and morbidity follow-up for up to 20 years. These are adults from the general population who participated in four surveys of 4,000-5,000 subjects each. The individuals were from 25 to 74 years of age and randomly selected from a population of 600,000 citizens. Furthermore, data from two follow-up investigations will be available shortly, covering about 6,000 participants re-investigated after 7-10 years. Meanwhile, the oldest age group is now above 90 years old. In the underlying studies a wealth of information on sociodemography, environmental factors, smoking, nutrition, alcohol consumption, general medical history, and various laboratory parameters has been collected. Genomic DNA, serum plasma, and urine are available from most of the participants and also available are the immortalized cell lines from 1,500 persons.

The KORA-gen infrastructure covers aspects of study design, sampling, and matching, of DNA-handling and the determination of genetic markers, and also of data structures and formats. This is supported by Internet-based information and by providing competent individual counseling and assistance. A Web portal has been implemented to deliver information about available data and biosamples, rules about data ownership and data access, and the process of applying for a collaborative project. All genotypes are fed back into the common database for permanent storage.

The gradual accumulation of this genotypic information will add significant value to the overall dataset. In maintaining and administrating the central KORA-gen data base, the GSF National Research Center for Environment and Health acts as trustee. For all genetic and phenotype data items, ownership is given to those scientists who provided the data. Access to these data sets for scientific analyses is only granted with the permission of the data owners—based on the given rules of ethics and confidentiality, as well as the quality criteria.

We have performed classical epidemiological research since 1984/85, first within the WHO MONICA project (Monitoring of trends and determinants in cardiovascular disease) and then in the KORA project (Cooperative health research in the region of Augsburg). We started with cardiovascular questions and then expanded these activities to focus on other diseases. We established a common database and a trustee system for the mutual use of the data, co-financed by several partners. Since this system worked so efficiently and generated a large number and variety of publications—in total about 400 papers through the end of 2005—we thought of offering it to a broad spectrum of users who are interested in genetic research.

However, before this could be realized, questions of how to deal with data ownership, ethical issues, and questions of confidentiality needed to be resolved. In 2005, a Web site was established to facilitate the use of this valuable resource. Meanwhile KORA-gen is well accepted and frequently used by German researchers as well as by international scientists.

KORA-gen demonstrates that existing population-based studies can successfully be used for genetic research. KORA-gen is based on the Cooperative Health Research Initiative in the region of Augsburg near Munich in Southern Germany. It is hosted and funded by the GSF-National Research Center for Environment and Health, as part of the Helmholtz Association. There is co-financing from the German National Genome Research Network (NGFN) and from several collaborators from among universities and research centers. KORA-gen is member of the Public Population Project in Genomics (P³G).

Related Links:

• KORA-gen
• GSF-National Research Center for Environment and Health
• Public Population Project in Genomics (P³G)

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