Anyone who’s been affected by cancer will be used to hearing about the ‘big four’ – breast, lung, bowel and prostate cancer, the most common types in the UK, which are seldom out of the media spotlight.

But people who are diagnosed with one of the many rare types of cancer sometimes feel that their disease isn’t receiving much publicity.

At Cancer Research UK we’re acutely aware that rare cancers don’t always get the attention they need. That’s why these diseases are a priority for us – we know more research is needed to help patients and save more lives.

So we’ve joined forces with other research groups from around the world to set up the International Rare Cancers Initiative (IRCI) – a new collaboration to boost the number of clinical trials developing treatments for rare cancers.

We’re working with the UK National Institute for Health Research Cancer Research Network (NCRN), the US National Cancer Institute (NCI), and the European Organisations for Research and Treatment of Cancer (EORTC), focusing on diseases such as salivary gland cancer and melanoma of the eye.

The cancers the IRCI is focusing on are classed as ‘rare’ because each type has less than two cases diagnosed each year for every 100,000 people in the UK (compared to, say, around 47 annual cases of bowel cancer for every 100,000 people).

But although each rare cancer type affects only a small number of people each year, when you look at the bigger picture the numbers are compelling. The IRCI is focusing on five types of cancer to start with – salivary gland cancer, small bowel adenocarcinoma, gynaecological sarcoma, melanoma of the eye and penile cancer. Together, these cancers affect more than 2,000 people every year in the UK.

Clinical trials – size matters

Rare cancers are varied and can be very different from each other, but they also have one important thing in common. Because so few people are affected, it can be a real challenge for researchers to find enough patients to take part in clinical trials testing new treatments.

In clinical trials, size really does matter – one large trial with many patients should give much clearer, more reliable evidence than several small ones with fewer participants. The more patients are involved, the more certain researchers can be that the patterns seen in trial results are real and not just down to chance. But the scarcity of patients with rare cancers makes it hard to work out the best ways to tackle these diseases.

To solve this problem, the IRCI’s main aim is to design clinical trials involving patients across several countries that will reveal the most effective treatments for rare cancers. By bringing together researchers in the UK, the USA and the rest of Europe, the initiative provides scientists with access to many more patients. And more trial participants means better science, more helpful results, and – ultimately – increased survival from these diseases.

What are we already doing to tackle rare cancers?

As well as boosting research into rare cancers, we’re already funding research into some rare diseases. In Sutton, Dr Emma Hall is running a trial looking into salivary gland cancer – one of the rare cancers that IRCI will be tackling.

She’s investigating a new radiotherapy technique called IMRT (which Cancer Research UK scientists helped to develop). This method of giving radiotherapy for salivary gland cancer could help to reduce hearing damage – a common side effect of radiotherapy to this part of the head.

And in Liverpool, Professor Bertil Damato is testing a new drug treatment for melanoma of the eye. Some patients with this type of cancer need to have their eye removed, but it’s hoped this could be avoided by using a drug called ranibizumab to control the tumour. Professor Damato’s trial will test this approach to see if the drug could help to reduce the need for surgery for this type of cancer.

From the lab bench to the patient’s bedside

Clinical trials are a crucial step towards saving more lives, but behind every single trial lies years of previous research. Cancer Research UK scientists (and others all over the world) are unpicking the inner workings of cancer cells. This research is revealing fascinating new insights that are relevant to all forms of the disease, from the common to the very rare.

Knowledge from lab research is used to design and develop new ways to treat all types of cancer, and the IRCI will transform this work into trials testing new treatments for rare forms of the disease.

Watch this space for news of the IRCI’s first trials – which we hope will ultimately lead to more effective treatments and better outcomes for patients with rare cancers.