The Institute of Oncology Ljubljana is a member of European reference network for all patients with one of the rare genetic tumour risk syndromes (genturis), which is composed of 23 UE centers. .
The aims of ERN GENTURIS are:
- Improved identification of people living with a genetic tumour risk syndrome
- Reduced variation in clinical practice and outcomes
- Development of evidence based clinical guidelines
- Development and use of patient registries, biobanks and research studies
- Defined health care pathways to facilitate improved access to international specialist clinical knowledge for patients and their families living throughout the EU
- Pan-European Development and use of patient registries, biobanks and research studies
ERN GENTURIS takes a family-based approach, focussing not just on the individual but also their relatives who may also be at risk given the hereditary nature of the conditions.
ERN GENTURIS is coordinated by Radboud university medical center in Nijmegen, The Netherlands.