For a long time, rare cancer research was underfunded and not prioritised. Targeted investment from the NHMRC and the MRFF, particularly over the past five years, has shifted the focus and driven a much-needed increase in research opportunities.
However, we have a long way to go. To help tackle poor outcomes, we need increased and sustained investment in rare cancer, genomic and precision oncology research. A collaborative approach to bridging the gap between research and clinical practice is the key to finally improving rare and less common cancer outcomes.
The challenge
There are significant challenges in translating advances in research and development into tangible, timely benefits for patients. The reasons for this lag are complex, including:
- inflexible regulatory and reimbursement pathways
- lack of commercial incentives for rare cancer drug development
- limited health system capacity to implement new models of precision oncology equitably.
Addressing the issue
There is an urgent need to accelerate the pace of change and ensure that hard-won research advances deliver meaningful benefits for people with rare and less common cancers. This requires strategic, coordinated efforts to:
- boost dedicated rare cancer research funding across the pipeline and foster collaborative research networks and data-sharing platforms to maximise collective impact
- streamline regulatory and HTA processes to enable earlier access to emerging therapies
- invest in health system capacity to equitably implement new care models and facilitate clinical trial access
- enable and support healthcare systems to update clinical practice and patient pathways quickly and safely.
To create a seamless and efficient pipeline that rapidly moves breakthrough discoveries from bench to bedside, we need investment in state-of-the-art research facilities, biobanks, genomic sequencing capacity and data systems, as well as the right training programs and career pathways that attract and retain top talent in rare cancer research.
What RCA is doing about it
RCA support research projects across a range of rare cancer priorities, working with research institutions, clinicians and patients.
What we want
The NHMRC and the MRFF should prioritise research into rare cancers, genomics, the application of artificial intelligence, innovative testing and treatment, and critically, its translation into clinical practice.