GENTURIS - European Reference Network on Genetic Tumour Risk Syndromes

Genetic tumour risk syndromes are disordersin which inherited genetic mutations stronglypredispose individuals to the development oftumours. The lifetime risk of cancer can beas high as 100 %. While there is considerablediversity in the organ systems that may beaffected, individuals affected by these conditionsshare similar challenges: delay in diagnosis,lack of prevention for patients and healthyrelatives, and therapeuticmismanagement. At present,only 20-30 % of peoplewith genetic tumourrisk syndromes have been diagnosed.

ERN GENTURIS is workingto improve identificationof these syndromes,minimise variation in clinicaloutcomes, design and implement guidelines,develop registries and biobanks, supportresearch, and empower patients. The networkwill educate the public and healthcareprofessionals, and foster the sharing of bestpractice across Europe. Access to multidisciplinarycare will be improved, with new modelsand standards for sharing and discussingcomplex cases. The network is enhancing thequality and interpretation of genetic testing,and increasing patient participation in clinicalresearch programmes.

ERN GENTURIS will cooperate with other ERNsto improve the care of patients with genetictumour risk syndromes who develop conditionsthat fall within the expertise of anothernetwork.