The International Rare Cancer Initiative

The International Rare Cancer Initiative (IRCI) was established in 2011 to make practice-changing clinical trials in rare cancers possible. Founding members included the U.S. National Cancer Institute, UK National Institute for Health Research, Cancer Research UK, and the European Organisation for Research and Treatment of Cancer. Subsequently, the effort has been joined by the French National Cancer Institute, the Canadian Clinical Trials Group, Japan Clinical Oncology Group, and the Clinical Oncology Society of Australia.

IRCI focuses on rare cancers because they are a pressing public health priority: more than two-thirds of cancers in patients less than 20 years of age are rare; about one-third in patients age 20 to 39; and across all ages, about a fifth of cancers in the U.S. are rare. Rare cancers are collectively more common than breast, colon, lung, or prostate cancer. Additionally, patients with rare cancers have worse outcomes than patients with more common cancers: 75% of patients with common cancers are alive five years after diagnosis versus just 57% of those with rare cancers. From a research standpoint, rare cancers have been studied less, making it likely that they hold substantial potential for scientific discovery.

Rare cancers are defined as those that occur in less than 6 per 100,000 people per year. IRCI does not focus on variants of more common cancers, as these can often be studied in existing trials. Rather, IRCI seeks to identify rare cancers where there is a testable hypothesis, interest from multiple international partners, and no other forum to bring together all the actors needed to make a clinical trial happen.

To date, IRCI has convened 12 expert groups and has completed trials in high-grade uterine sarcoma and metastatic anal cancer. Currently, studies are underway in high-grade uterine sarcoma, penile carcinoma, androgen receptor positive salivary gland cancer, and small bowel adenocarcinoma, with additional studies at the planning stage.

For more information on this initiative, please contact the Center for Global Health at NCICenterforGlobalHealth@mail.nih.gov.

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