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Cancer Research UK (CRUK) is joining forces with international research groups from the UK, Europe, and the US-including the National Institute for Health Cancer Research Network (NCRN) in the UK, the National Cancer Institute in the US, and the European Organisation for Research and Treatment of Cancer (EORTC)-to launch an initiative to boost the development of new treatments for patients with rare cancers. The announcement was made by CRUK's Chief Executive, Dr. Harpal Kumar, at the 2011 World Cancer Leaders' Summit.


The effort, the International Rare Cancers Initiative (IRCI), will design and fund clinical trials of treatments for cancers that occur in approximately fewer than two cases per 100,000 people. Initially the plan is to focus on five cancer types: salivary gland cancer, small bowel adenocarcinoma, gynecological sarcoma, ocular melanoma, and penile cancer.


The first clinical trial developed as a result of the IRCI, a study for patients with uterine leiomyosarcoma, recently received approval from both the NCI and CRUK, and nine additional studies are in development, with funding from the partner organizations.


Among the other rare cancer types being considered for trials are anaplastic thyroid cancer, fibrolamellar hepatoma, thymoma, and metastatic/relapsed anal cancer.


"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," Dr. Kumar said. "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, and 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."


Added NCRN Director Professor Matt Seymour, "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 organize large-scale trials in diseases affecting only a few patients in any one region[horizontal ellipsis].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, MD, 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 organization, 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 tumors bring 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.".