For patients with rare diseases, the trek from doctor to doctor, and expert to expert, with a long paper trail of physician's letters, test results, and images is practically a given. And when a diagnosis is finally made, they are faced with the difficulty of obtaining the correct therapy. To help these patients more quickly, valuable information regarding the course of the disease and its therapy, which is currently kept at individual healthcare institutions, must be made available for essential Europe-wide research.
The European Joint Programme seeks to establish the technical and substantive requirements for clinical data to be used commonly for research purposes. Toward this end, Goethe University will receive the largest funding sum of all participating German institutions: more than one million euro over the coming five years.
In Frankfurt, the focus will be on developing tools to integrate and standardise patient data. This includes software solutions for setting up disease-specific patient registries in which specific patient data can be collected on an ongoing basis. This will result in a representative patient group whose data can be analysed much more simply thanks to its standardization.
"I think we can say with pride that in the future, Frankfurt will have a central role in Europe regarding the patient registry of rare diseases," says Professor T.O.F. Wagner from the Frankfurt Reference Centre of Rare Diseases. Together with Dr. Holger Storf, Head of the Medical Informatics Group, he developed an open source registration platform for rare disease. The modules in it were used, among other things, to set up the European Rare Disease Registry Infrastructure. They also constitute the basis for the approved work in Frankfurt which, together with Professor Gernot Rohde, Head of Pneumonology at the University Hospital, should contribute to an improved interoperability of registries.
"Rare diseases are a great example of a field of research that greatly profits from coordination at the European and international level, and which therefore requires technical support," says Dr. Holger Storf. The new project should help overcome fragmentation and make cooperation easier.
Within the EU project, already existing tools and programmes are to be consolidated and continued at a larger scale. Data from research, clinics, tests, processes, knowledge and know-how are to be shared throughout Europe in the future. In addition, an efficient model of financial support of all types of research on rare diseases – fundamental, clinical, health service – is to be introduced. The goal is an accelerated exploitation of research results in order to reduce the typical problems and ongoing suffering of patients.
Goethe University has already contributed to an improvement in the situation of patients with rare diseases through several different successful projects. In particular, the Mapping of Health Care Providers for People with Rare Diseases (http://www.se-atlas.de) deserves mention. It supports patients, their families, and health personnel in locating experts or patient organisations. The coordination and technical support of the European Reference Network for rare respiratory diseases (ERN-LUNG) is also in Frankfurt.
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Further information:
Professor T.O.F. Wagner, Frankfurt Reference Centre for Rare Diseases, Faculty of Medicine, Niederrad Campus, Tel.: +49 (69)- 6301 87899, [email protected].
Dr. Holger Storf, Medical Informatics Group (MIG), University Hospital Frankfurt Frankfurt, Tel.: +49 (69) 6301-84438, [email protected].
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Goethe University is a research-oriented university in the European financial centre Frankfurt The university was founded in 1914 through private funding, primarily from Jewish sponsors, and has since produced pioneering achievements in the areas of social sciences, sociology and economics, medicine, quantum physics, brain research, and labour law. It gained a unique level of autonomy on 1 January 2008 by returning to its historic roots as a "foundation university". Today, it is among the top ten in external funding and among the top three largest universities in Germany, with three clusters of excellence in medicine, life sciences and the humanities. Together with the Technical University of Darmstadt and the University of Mainz, it acts as a partner of the inter-state strategic Rhine-Main University Alliance. Internet: http://www.uni-frankfurt.de
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