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A rare partnership

A rare partnership

Patient-driven clinical trial offers new hope for rare cancer diagnosis

On World Cancer Day on Monday 4 February, a special VCCC Monday Lunch Live event highlighted the value of patient advocacy in prompting new research into rare cancers.  Rare cancers collectively cause more cancer deaths in Australia than any single cancer type.

Professor Clare Scott, clinician-scientist from the Walter and Eliza Hall Institute and medical oncologist at Peter MacCallum Cancer Centre; the Royal Women’s Hospital and Royal Melbourne Hospital reported on an innovative patient-driven clinical trial that is exploring genomic profiling of rare cancers. She was joined by Founder of Rare Cancers Australia, Mr Richard Vines who with his wife Kate were the instigators of the trial.

The NOMINATOR (GeNomic Matching Treatment for Rare Cancers) trial is investigating whether profiling can improve diagnosis and treatment of people with rare cancers.

The premise of the trial is that next-gen sequencing analysis and immuno-profiling of tumour tissue from selected patients is undertaken so that specialists can “match” the cancer to a molecular or immune type in order to guide selection of therapy, with follow-up of patient outcome.  It is a national, multi-institutional observational study, involving 100 patients across five states.

Rare Cancers Australia

Every year 52,000 people are diagnosed with a rare cancer – of which there are more than 200 types. Rare Cancers Australia aims to increase awareness, highlight the need for further research and initiate policy discussion and action to improve the lives and outcomes of Australians living with a rare or less common cancer.

Both Prof Scott and Mr Vines acknowledged the unique opportunity created by this patient-led initiative and the hope, knowledge and understanding that it will give to people who may feel isolated by their diagnosis. 

Heather Camp, Peter Mac patient

Heather Camp endorsed the trial and spoke about the hope and inclusion it offered to patients like herself: “Unfortunately for my rare cancer not a lot of treatment options other than surgery existed.” Heather felt that being included in the trial has provided opportunities on two fronts - to contribute to the data and to feel connected to a group of clinician-scientists who are exploring a different way to look at cancer.

Learn more about Rare Cancers Australia and how you can be involved.