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International Rare Cancers Initiative: EORTC – UK – US Global Collaboration

The EORTC has joined forces with Cancer Research UK, the National Institute for Health Research Cancer Research Network (NCRN), and the United States National Cancer Institute (NCI) to launch an initiative to boost the development of new treatments for patients with rare cancers.
24 Nov 2011

This International Rare Cancers Initiative (IRCI) 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.

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 tumours 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.”

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 additional 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.”

The following rare cancers currently form the core activities of the IRCI. The names of the lead clinicians for each rare cancer have been listed:

Salivary gland cancer (Head and Neck)

  • Leads: Dr Kevin Harrington (UK), Dr Alan Ho (US), Dr Lisa Licitra (EORTC)

Anaplastic thyroid cancer (Head and Neck)

  • 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)

Gynaecological sarcoma

  • 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)

Penile cancer

  • Leads: Dr Steve Nicholson (UK), Dr Curtis Pettaway (US), Dr Christine Theodore (EORTC)

Ocular melanoma

  • Leads: Dr Ernie Marshall (UK), Dr Richard Carvajal (US), Professor Poulam Patel (EORTC)


  • Leads: Professor Mike Lind (UK), Professor Frank Detterbeck, Dr Sanjay Popat

Metaplastic/relapsed anal cancer

  • Leads: Dr Rob Glynne-Jones (UK), Dr Al Benson (US), Professor Dirk Arnold

About the EORTC

Founded in 1962, the EORTC is a non-profit international cancer research organization under Belgian law. The EORTC has the mission to develop, conduct, coordinate and stimulate translational and clinical research in Europe to improve the management of cancer and related problems by increasing survival but also patient quality of life. The EORTC is both multinational and multidisciplinary, and the EORTC Network comprises over 300 hospitals and cancer centres in over 30 countries which include some 2,500 collaborators from all disciplines involved in cancer treatment and research.

The 180 members of the EORTC Headquarters staff handle some 6,500 new patients enrolled each year in cancer clinical trials, approximately 30 protocols that are permanently open to patient entry, over 50,000 patients who are in follow-up, and a database of more than 180,000 patients.

About the National Cancer Institute (NCI)

The National Cancer Institute is the part of the US Government’s Department of Health and Human Services charged with research into the cancer prevention, diagnosis and treatment.

About the National Institute for Health Research Cancer Research Network (NCRN)

The National Institute for Health Research Cancer Research Network (NCRN) is funded by the Department of Health. Its role is to support the development and delivery of cancer clinical research. The National Institute for Health Research provides the framework through which the research staff and research infrastructure of the NHS in England is positioned, maintained and managed as a national research facility.

The NIHR provides the NHS with the support and infrastructure it needs to conduct first class research funded by the Government and its partners alongside high-quality patient care, education and training. Its aim is to support outstanding individuals (both leaders and collaborators), working in world class facilities (both NHS and university), conducting leading-edge research focused on the needs of patients.

About Cancer Research UK

Cancer Research UK is the world’s leading cancer charity dedicated to saving lives through research. The charity’s ground-breaking work into the prevention, diagnosis and treatment of cancer has helped save millions of lives. This work is funded entirely by the public. Cancer Research UK has been at the heart of the progress that has already seen survival rates double in the last forty years. Cancer Research UK supports research into all aspects of cancer through the work of over 4,000 scientists, doctors and nurses. Together with its partners and supporters, Cancer Research UK’s vision is to beat cancer.

Last update: 24 Nov 2011

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