In approximately 700 patients per year a genetically defined diagnostic subgroup of hereditary bowel cancer is ascertained; namely HNPCC, FAB, AFAP of MAP. The majority of these patients are treated at one of the UMC's. In all the UMC's combined, approximately 400 new patients are treated per year.
The Netherlands has a leading position in the area of scientific research, registration, diagnostics and treatment of hereditary bowel cancer. There is growing collaboration between the different UMC's due to the complexity of the care for these patients. This collaboration also leads to well defined data bases and biobanks of a size sufficient enough to enable scientific research. A further pooling of expertise and material will contribute to the maintenance of the Netherlands’ leading position and may result in a unique position for scientific research and the clinical applications for his disease.
Improvement in the dissemination of information, prevention of, and research on hereditary bowel cancer is being addressed in various ways. This takes place in conjunction with charitable organisations (KWF Kankerbestrijding and the Maag Lever Darm Stichting), the patient society Stichting Lynch Polyposis and the Nederlandse Federatie Kankerpatiëntenorganisaties. There is also a partnership with Stichting opsporing erfelijke tumoren (STOET).
Alliances with the biomedical industry are sought-after especially with small and medium-sized businesses. For so far is known, there is no European co-operation in the area of hereditary bowel cancer.