Central register for German biobanks

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Biobanks are used to store many types of samples, most frequently blood-, tissue-, or DNA samples. Source: H.-G. Schröder/UKJ

15.11.2010  - 

Thousands of well-characterised samples are stored in German human biobanks. However, utilising this data fully and efficiently can be a difficult task. Every biobank maintains its own register of self-defined keywords, meaning that searching through multiple databases at once can become a difficult and laborious task. Scientists are now hoping to change this state of affairs: In a project funded by the Federal Ministry of Education and Research, a register is being created to merge the various German biobanks.

All manner of samples can be found in German biobanks: bodily fluids such as blood or urine, as well as tissue samples from the heart, brain, or skin. Some of these samples are frozen at -200°C in liquid nitrogen, others are preserved with chemicals and stored into small wax cubes, and some are processed immediately and only purified genetic material retained. The Telematics Platform for Medical Research Networks – TMF – will eventually list about 90 different biobanks in a specially designed register. Depending on the topic, this will allow investigations to be carried using samples from patient groups that take in a specific age or disease picture, or from large cohorts of healthy individuals By gathering and analysing samples from as many people as possible, researchers hope to discover similarities between specific patient groups.

Typical issues that are hoped to be tackled by the initiative include, for example: Is protein X up-regulated in the course of a particular disease? Or, is a particular gene variant Y involved in the development of a specific disease picture? This kind of variance in the biobank landscape gives an idea of the difference in design and set-up of the individual databases. There are issues not only with the extremely different gathered parameters, but frequently also with matters relating to simple information, such as donor gender: While one database might distinguish between the German ‘männlich’ and ‘weiblich’, another might expect ‘male’ or ‘female’ to be inputted , with others using abbreviations such as M/W, or m/f. Retrieving this data from all the various databases can turn into a mammoth task.

Six networked biobanks

If all goes to plan, this far from ideal situation will soon change. Project manager Christina Schroeder from the Fraunhofer Institute for Biomedical Engineering (IBMT) explains how the data will be consolidated: “We are creating an infrastructure that will provide researchers across Germany with access to a broad range of human biobanks in Germany, over the Internet and through a central database. This includes disease-specific and population genetics databases, as well as clinical biobanks. “The IBMT is a leading centre in Germany for the development of large biobanks. Since 2007, the local ‘Biodatabanks’ working group has managed the CRIP network. CRIP stands for Central Research Infrastructure for Molecular Pathology’, and is the central infrastructure for molecular pathology research. The network brings together important collections of clinical data, and serves as a prototype for Germany-wide database projects.

Together with the TMF and the six initial participating biobanks, the Fraunhofer IBMT in St. Ingbert hopes to lay the groundwork for a central German biobank infrastructure. The starting signal was sounded at the first ‘coordination conference’ on 22 November in Berlin. The project portal is being funded with half a million euros by the Federal Ministry of Education and Research (BMBF). An initial task will be to decentralise data from the following biobanks: The BioPsy collection at the Central Institute of Mental Health in Mannheim consists of around 8,600 blood or saliva samples from patients with psychiatric disorders. The biomaterial bank of the Competence Network Heart Failure (CNHF) run by the Charité University Medicine Berlin has collected DNA and blood samples from about 12,000 individuals suffering from heart and circulatory diseases. The competence network HIV/AIDS headed by the Ruhr-University Bochum brings together blood, cerebrospinal fluid and tissue samples, and throat swabs from around 15,000 patients. The paediatric diabetes biobank is operated by the diabetes competence network. Serum samples from children suffering from diabetes are stored in Ulm. The biobank competence net Sepsis (SepNet Biobank) operated by the University of Jena is planning to collect up to 60,000 DNA and blood samples from septic patients. DNA, blood and urine samples from 4,300 donors are being gathered in the University of Greifswald’s Study on Health in Western Pomerania (SHIP), which is set to last over ten years.

Quicker application of results from basic research

Important preliminary work has already been completed. Through years of preparatory efforts, the TMF and IBMT have established an ethical and legally sound basis for sharing data. Sophisticated regulations such as the ‘Generic Data Protection Concept’ or the privacy requirements of the ‘CRIP Privacy Regime’ are designed to protect donor privacy and prevent data misuse. One important aspect of this will be that data will be processed anonymously. “The TMF and Fraunhofer IBMT provide an excellent basis for allowing public access to existing, valuable biobank resources without putting the confidentiality of our patients or our scientific work at risk,” said Norbert Brockmeyer from the HIV/AIDS Competence Network, speaking of scientists’ confidence in the new infrastructure. The researchers foresee a number of advantages in the new database: Samples and data required for a project will be available much faster than before. It is hoped that this will allow results from basic research to make it to patients far quicker in the future. In addition, the material already being used and gathered by existing biobanks will be better exploited than was previously the case. Some basic research projects could possibly access existing biobanks without having to establish new sample collections – a lengthy and costly process. In the medium term, it is hoped to integrate all the biobanks in Germany into the system. Until then, the first six biobanks will be confronting and testing the related practical issues.