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A recent report from the American Cancer Society (ACS) found that one in five cancers diagnosed in the United States (U.S.) is a rare cancer, which is defined as an incidence of fewer than six cases per 100,000 people per year. By this definition, around 200 forms of rare cancer compose around 20%-25% of all U.S. cancer diagnoses, which affect more than 400,000 Americans per year.

There are a significant number of incidences of rare cancers in the U.S. military population. Over 60 forms of cancer disproportionately impact those who have served in the military, and 67% of them are rare cancers. 2017 data suggests that there are approximately 8,000 new cases of rare cancers in the U.S. Department of Veterans Affairs (VA) per year which account for 16% of all VA cancers.

Rare cancers are traditionally understudied, reducing the progress of research and hindering decisions for patients, physicians, and policy makers. For many rare cancers, research to identify causes or develop strategies for prevention and early detection is extremely difficult. In addition, rare cancers can be extremely challenging in terms of diagnosis, getting information about the cancer and caregiver assistance, fewer number of clinical trials, and lack of treatment options.

The U.S. Congress established the Rare Cancers Research Program (RCRP) in the Fiscal Year 2020 Department of Defense appropriation with an appropriation of $7.5 million to address extreme challenges of people with rare cancers. RCRP will support research on the prevention, detection, diagnosis, and treatment of Service Members, Veterans, their families, and the American public.

RCRP will be managed by utilizing the CDMRP two-tiered review process. A stakeholders meeting was held on 17 April 2020, which brought experts from different subject areas together to identify knowledge gaps, outcome, and product needs for the state of the science and patient care.

At the stakeholders meeting, it was decided that CDMRP will follow the definition of rare cancer as an incidence of six or fewer cases per 100,000 people per year. The RCRP focuses on the following areas:

• Biology and Etiology: Identify disease-defining molecular pathways, cell context, and microenvironment.
• Research Model: Develop and validate rare tumor-specific models that can support clinical trial readiness.
• Therapy: Identify novel therapeutic strategies, including drug repurposing.
• Platform Development: Development of platforms (such as tumor tissue repository with clinical annotation, centralized databanks, patient registry with common data structure, research model and “omics” database, longitudinal studies of natural history, and treatment response) for multiple rare cancers, to allow sharing of data, bio-specimens, and resources.

American Cancer Society: https://www.cancer.org/cancer/all-cancer-types.html

FY20 RARE CANCERS RESEARCH PROGRAM STAKEHOLDERS MEETING SUMMARY

FY20 RARE CANCERS RESEARCH PROGRAM STAKEHOLDERS SURVEY SUMMARY