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Engaging with individuals who are affected by hereditary cancer (Lynch Syndrome)


Lynch syndrome (LS) is an inherited cancer syndrome which significantly increases a carrier's lifetime risk of several cancers, most notably colorectal cancer (CRC).  Recent Australian data has shown that up to 54% of CRC patients with suspicious LS phenotypes were not referred for genetic testing.  Evidence indicates that hospitals and patients face a plethora of infrastructure, psychosocial and environmental barriers to detecting LS patients.

As part of a large Cancer Council NSW research program, this project will investigate both qualitative and quantitative perspectives of individuals with LS throughout their patient journey, which may include genetics referral, screening, disease detection, treatment and/or surveillance.


Associate Professor Natalie Taylor.

Research location

Health Sciences - Generic

Program type



This will be a mixed methods PhD project and may consist of the following components:

  • Development of a discrete choice experiment to assess hypothetical scenarios amongst people (general public + LS individuals) about testing uptake and result dissemination 
  • Development of a health-state preference survey questionnaire to quantitatively assess utility/disutility of impactful health states
  • Use the two studies above to better estimate quality-adjusted life years, and cost-effectiveness of screening pathways for LS patients
This PhD project will be linked to two existing LS projects being conducted at CCNSW: 1) NHMRC funded project to perform cost-effectiveness evaluation of screening for LS mutation carriers; and 2) Cancer Institute NSW and Cancer Australia co-funded project to improve detection of colorectal cancer patients with a high risk of LS.

The overarching aim of this PhD will be to generate new and robust evidence regarding utilities and dis-utilities for LS patients that can be entered into the existing LS economic model, and further improve estimates of cost-effectiveness of LS screening pathways. 

Vitally, this PhD will capture a more holistic understanding of the patient perceived perspectives regarding LS testing and treatment options in Australia.

Additional information

The host unit for this research opportunity is Cancer Council NSW.

Applicants should have an academic background in epidemiology, public or population health, health sciences, psychology, behavioural science, health economics, or a related discipline.  A bachelor's degree with first-class honours (including a research component equating to one full time semester of study), or equivalent research experience, with publications in refereed journals is highly desirable.

A PhD stipend of AU $30,000 per year, tax free, is currently available for three years from Semester 1, 2018.  An additional $2,500 funding to support research activities will be available each year.  Candidates must be a citizen or permanent resident of Australia or New Zealand.  The research will be carried out at Cancer Council NSW.  The successful candidate must also fulfil the entry requirements for admission to candidature for the degree of Doctor of Philosophy (PhD) at the University of Sydney.

Please see for details on how to apply or contact Dr Natalie Taylor -

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Opportunity ID

The opportunity ID for this research opportunity is 2324

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