TITLE:An introduction to ICCon - Inherited Cancer Connect Partnership
AUTHORS:K Drew1, I Campbell1,H Dawkins3, S Fox1,J Hiller6,P James1,J Kirk7,G Lindeman10,F Macrae5,J McGaughran12,BMeiser4, N Pachter9,L Petelin1, C Saunders3,C Scott8, G Suthers11,A Trainer1, R Ward2,MA Young1, ICCon Collaborators and G Mitchell1.1Peter MacCallum Cancer Centre, 2Prince of Wales Clinical School,3University of Western Australia,4University of NSW, 5Royal Melbourne Hospital, 6Australian Catholic University,7Westmead Hospital, 8Walter and Eliza Hall Institute, 9King Edward Memorial Hospital for Women, 10Royal Melbourne Hospital, 11Women’s and Children’s Hospital, SA, 12Royal Brisbane and Women’s Hospital

Background:ICCon is a 5yr Project supported by CCNSW. It involves the collective efforts of Australian Familial Cancer Services and collaborating University and Hospital departments. Inherited cancer syndromes are individually rare but collectively importantas they impose a significant impact on affected families national healthcare costs. A collaborative approach is essential to improve targeted cancer prevention, screening, treatment & research. Focussing research efforts and clinical services will impact positively on national cancer incidence, outcomes and costs.

Aims:

  • To improve the outcomes of people with inherited cancer syndromes
  • To formalise the collaborative links between clinics and between clinics and researchers
  • To set a national translational familial cancer research agenda and the means to deliver it by integrating research activities as part of routine clinical care
  • Harness the research potential of the FCCs

Study Plan Priorities:

1. Develop a national infrastructure to connect the inherited cancer community

a) The ICCon Database will be anational database of all mutation carriers identified through FCCs. Will measure the truescope of inherited cancer enable research (identify potential cohorts provide access to the large collective pool of data/samples).

b) Harmonise ethical frameworks throughout FCCs (assist with projects such as gene discovery contribution of clinical data/ DNA to national/international research).

c) A Consumer Advisory Panel will be established as a key partner in ICCon.

2. Develop a national approach to identify people at risk of heritable cancers

Universal screening of colorectal cancer populations for Lynch Syndrome (LS) is feasible effective. Audit current practice barriers and develop a national policy for universal screening.

3. Improve the accuracy of inherited cancer risk predictions

Measure prospective cancer risksin high risk breast cancer families with no identifiable mutation and Australian families with Lynch syndrome (per gene mutation).

Update clinic pedigrees for new cancers developing after initial family ascertainment, create empiric 5 and 10 year cancer risk tablesand evaluate the performance of available risk prediction models in the Australian context.

4. Improve cancer risk management of people with hereditary cancer syndromes

a) National eviQ cancer genetic guidelinesexist; developed by the clinical community; are evidence-based information at the point of care.

We will audit patterns of their utilisation (how/by whom are they used?What are the barriers to access/use?) Current clinical practice will be auditedagainst the guidelines via file review.

We will investigate the impact of mutation carrier follow-up programson the uptake of cancer risk management strategies and undertake a cost-effectiveness analysis of the program.

b) Use of risk-reducing medication(RRM) for breast cancer (SERMs) and Lynch Syndrome (aspirin).We will investigate current practices in FCCs and the views of people at risk about RRM, developeducational materials and test their efficacy in regardsto decision-making around RRM and undertake a cost-effectiveness analysis of aspirin as a RRM in LS.