An introduction to ICCon - Inherited Cancer Connect Partnership (#184)
Background: ICCon is a new research program bringing together the Australian Familial Cancer Services and familial cancer research groups. Inherited cancer syndromes are individually rare but collectively important; they impose a significant impact on affected families and national healthcare costs. A collaborative approach to research is essential and focussing research efforts and clinical services on high risk families will impact positively on national cancer incidence and outcomes.
• Improve outcomes of people with inherited cancer syndromes
• Formalise collaborative links between clinics and between clinics and researchers
• Set a national translational familial cancer research agenda and the means to deliver it by integrating research activities as part of routine clinical care
1. Develop a national database of all mutation carriers and harmonise ethical frameworks for FCC-based research. This will enable research by identifying potential research participants and provide access to the large collective pool of data/samples.
2. Develop a national policy for population-based screening for Lynch Syndrome (LS).
3. Improve the accuracy of cancer risk predictions:
• In high risk breast cancer families with no identifiable mutation and Australian LS families.
• Update clinic pedigrees for new cancers developing after initial family ascertainment
o create empiric 5 and 10 year cancer risk tables
o evaluate available risk prediction models in the Australian context.
4. Improve cancer risk management of people with hereditary cancer syndromes:
• Audit current clinical practice against national cancer genetics guidelines.
• Investigate the impact of mutation carrier follow-up programs and undertake a cost-effectiveness analysis of such programs.
• Investigate current practice relating to delivery of advice around risk-reducing medication (RRM) use for breast cancer (SERMs) and LS (aspirin).
• Investigate views of people at risk about RRM; develop educational materials and test their efficacy in regards to decision-making around RRM; undertake a cost-effectiveness analysis of aspirin in LS.