Advances in health care are providing cancer patients with longer lives and a better quality of life. However, a study published in the British Journal of Cancer by researchers at Queen’s University Belfast and The Belfast Trust highlights that 25% of all cancer patients are known as having a ‘rare’ form of cancer and won’t benefit from these advances in medical care, mainly due to the way funding in cancer research is prioritized.

The study entitled ‘Rare cancers: the greatest inequality in cancer research and oncology treatment’ points out that rare cancers comprise a staggering 198 varieties, which may be an independent cancer with a low frequency or a rare subtype of a more common type. Rare cancers by their very nature are much less commonly studied, making improvements in treatments for a number of cancers seem unachievable.

A lack of clinical trials in rare cancers is inextricably linked to a lack of scientific evidence, which can be attributed to difficulties in accessing funding. Applications for funding are often assessed using standard criteria, which are difficult to achieve in rare cancers. Professor Manuel Salto-Tellez, Chair and Professor of Molecular Pathology at Queen’s University, an author in this study, highlights the challenge with this approach: “The preliminary evidence that we usually present when applying for funding in ‘common’ cancers is very difficult to obtain in ‘rare’ cancer, or it simply does not exist.”

One solution is to share data on a global scale through establishing multi-national consortia. Queen’s researcher and Belfast Trust oncologist, Professor Richard Wilson, leads one of these consortia through the International Rare Cancer Initiative: “We shouldn’t expect to see the same level of detail for research proposals for rare cancers as we do for common cancers, where there is often a multitude of existing evidence and data available. Rare cancers desperately need funding to be able to produce the necessary preliminary data and evidence, helping us to get out of the current Catch22 situation.

"A shift in direction is needed if we are to make advances in the area of rare cancers, which affects millions of cancer patients around the world.”

Professor Salto-Tellez added: “Whilst overall rare cancers are lagging behind in research advances, thanks to generous funding from private donors The Sean Crummey Foundation and the Tom Simms Memorial Fund, we have been able to develop an active research group specifically looking at rare cancers here at Queen’s. Through this work we have already started to generate important developments in rare cancer diagnostics. It’s important that we build on this knowledge and expertise, which requires further funding if we are to pave the way in the area of rare cancers, which affects a quarter of all cancer patients.” 

Media

Media enquiries to Suzanne Lagan suzanne.lagan@qub.ac.uk or (+44) 28 9097 5292.