52. Development of network of cancer family syndrome registries in eastern Europe

Abstract

It has been proven that organizing the registries of families affected by CFS is very helpful in research leading to: 1. Identification of new genes of CFS, 2. Better knowledge of correlations in CFS, 3. Identification of external factors having impact on mutated genes, 4. Description of mutation characteristic for particular populations.

Thus, development of CFS registries is very important for increasing pre-clinical and clinical research facilities. Direct positive consequence will also be the improvement of quality of life by better management of patients affected by CFS. Without registries these patients are very often not identified and deprived of appropriate recommendations concerning prophylactics, surveillance and treatment. Development of CFS registries leads also to further improvement of quality of life by progress in management in families with these tumours which can be achieved by better organizing of research on CFS. Better management in CFS families decreases also health-care costs by lowering the number of cancers and increasing the number of tumours detected at their earliest clinical stage when the treatment is less expensive.

The scientific objectives of the project include:

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  elaboration of standards for a model cancer family syndrome registries in Eastern Europe

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  registration of ∼ 2000 families with different types of CFS in populations of East European countries (Czech, Hungary, Latvia, Lithuania, Poland)

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  initiation of European collaborative studies with the use of material collected by East European CFS registries.