An introduction to ICCon - Inherited Cancer Connect Partnership — ASN Events

An introduction to ICCon - Inherited Cancer Connect Partnership (#184)

Gillian Mitchell 1 , Ian Campbell 1 , Hugh Dawkins 2 , Stephen Fox 1 , Janet Hiller 3 , Paul James 1 , Judy Kirk 4 , Geoffrey Lindeman 5 , Finlay Macrae 5 , Julie McGaughran 6 , Bettina Meiser 7 , Nicholas Pachter 8 , Christobel Saunders 2 , Clare Scott 9 , Graeme Suthers 10 , Alison Trainer 1 , Robyn Ward 11 , Mary-Anne Young 1
  1. Peter MacCallum Cancer Centre, East Melbourne, VIC, Australia
  2. University of Western Australia, Perth, WA
  3. Australian Catholic University, Melbourne, VIC
  4. Westmead Hospital, Sydney, NSW
  5. Royal Melbourne Hospital, Melbourne, VIC
  6. Royal Brisbane and Women's Hospital, Brisbane, QLD
  7. University of NSW, Sydney, NSW
  8. King Edward Memorial Hospital for Women, Perth, WA
  9. Walter and Eliza Hall Institute, Melbourne, VIC
  10. Women's and Children's Hospital, Adelaide, SA
  11. Prince of Wales Clinical School, Sydney, NSW

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.