The announcement will be made by Dr Harpal Kumar, chief executive of Cancer Research UK, at the 2011 World Cancer Leaders’ Summit taking place today in Dublin.
The International Rare Cancers Initiative (IRCI) has been established by Cancer Research UK and the National Institute for Health Research Cancer Research Network (NCRN) in the UK, the National Cancer Institute (NCI) in the US, and the European Organisation for Research and Treatment of Cancer (EORTC).
The initiative will design and fund clinical trials of treatments for rare cancers – defined as those which occur in approximately fewer than two cases per 100,000 people. There are limited treatment options for patients suffering with these cancers and there is an urgent need to develop new therapies.
Initially the IRCI will focus on designing clinical trials for five cancer types: salivary gland cancer, small bowel adenocarcinoma, gynaecological sarcoma, ocular melanoma (melanoma of the eye) and penile cancer.
Helene Craddock, 37, a nurse in the intensive care unit at Bristol Children’s Hospital, was diagnosed with cancer of the salivary glands at the age of 19.
She said: “Being told you have cancer is a very difficult thing to come to terms with. You have a lot of questions, which is normal, but having a rare cancer means the answers are not always there.
“I am very thankful to say that although I had extensive surgery, and continue to be followed up, I am currently very well.
“There is a huge need to look into these rarer cancers, and I sincerely hope that this new research will lead to improvements in understanding, diagnosing and treating these cancers, and ultimately give us all more hope for our futures.”
The first clinical trial developed as a result of the IRCI, a study for patients with a type of gynaecological cancer called uterine leiomyosarcoma, has recently received approval from both the NCI and Cancer Research UK. Nine further studies are currently being developed through the initiative. The partner organisations will provide the funding that will enable patients in their countries to take part in the studies.
In addition, it is hoped that studies for other rare cancer types will be developed through the IRCI, including studies in anaplastic thyroid cancer, fibrolamellar hepatoma, thymoma and metastatic/relapsed anal cancer.
Dr Harpal Kumar, chief executive of Cancer Research UK, said: “This initiative is an exciting opportunity for some of the top clinicians in the world to work together to develop and run trials for rare cancers. We hope this will lead to new and more promising treatments for those patients who today have a very limited set of options.
“This is an urgent need. New treatments for rare cancer types are few and far between – these essential clinical trials are the first step in helping these cancer patients. International collaboration is critical to share knowledge and expertise in this area – it will help speed up and improve the design of these trials. We hope this initiative will increase survival from these diseases.”
Professor Matt Seymour, director of the NCRN, said: “Although each rare cancer may affect only a small number of patients, for those people it is critical that we find the best treatments. And combined, rare cancers affect thousands of UK patients every year.
“But research has lagged behind common cancers, partly because rare cancers have not been a priority for drug companies and funders, and partly because it is difficult to organise large-scale trials in diseases only affecting a few patients in any one region.
“Over the past decade, Cancer Research UK and the NCRN have led the world in making cancer research part of routine treatment in every hospital: over 46,000 UK patients took part in NCRN trials last year. We are confident that by bringing together experts from around the world we can do ground-breaking research, even in these rare diseases.”
Ted Trimble, director of NCI’s Center for Global Health, said: “This initiative will allow us to perform trials for cancers so rare that none of us could have managed it on our own. Working together like this allows us to reduce the cost of trials for each partner organisation, to speed development and conduct of rare cancer clinical trials, and to harness worldwide expertise in these rare conditions.”
Denis Lacombe, EORTC headquarters director, said: “The low numbers of patients with rare tumours brings an urgent need for international cooperation of experts with complementary skills and knowledge to find new ways to treat these diseases.
“This International Rare Cancers Initiative will allow cancer doctors to recruit patients for one large and effective trial, instead of several smaller trials whose results might be inconclusive.
“EORTC embraces this initiative. Rare tumors are a priority at EORTC, which has carried out landmark trials that have changed standard of care for rare cancers such as glioma and sarcoma.
“Patients and public health are at the center of the EORTC mission, and this initiative fits perfectly into the EORTC scientific agenda.”
For media enquiries please contact the Cancer Research UK press office on 020 3469 8300 or, out-of-hours, the duty press officer on 07050 264 059.
Notes to editors
The following eight rare cancers currently form the core activities of the IRCI. The names of the lead clinicians for each rare cancer have been listed:
Head and Neck cancer specifically;
Salivary gland cancer
Leads: Dr Kevin Harrington (UK), Dr Alan Ho (US), Dr Lisa Licitra (EORTC)
Anaplastic thyroid cancer
Leads: Dr Laura Moss (UK), Dr Keith Bible (US), Professor Martin Schlumberger (EORTC)
Small bowel adenocarcinoma
Leads: Dr Richard Wilson (UK), Dr Rob McWilliams (US), Dr Arnaud Roth (EORTC)
Leads: Dr Helen Hatcher (UK) Dr Martee Hensley (US), Professor Jean-Yves Blay (EORTC)
Fibrolamellar hepatocellular carcinoma
Leads: Dr Tim Meyer (UK), Dr Marcio Malogolowkin (US), Dr Michel Ducreux (EORTC)
Leads: Dr Steve Nicholson (UK), Dr Curtis Pettaway (US), Dr Christine Theodore (EORTC)
Dr Ernie Marshall (UK), Dr Richard Carvajal (US), Professor Poulam Patel (EORTC)
Professor Mike Lind (UK), Professor Frank Detterbeck, Dr Sanjay Popat
Metaplastic/relapsed anal cancer
Dr Rob Glynne-Jones (UK), Dr Al Benson (US), Professor Dirk Arnold