People with rare cancers needed to help scientists leading new program

The University of Colorado Cancer Center (UCCC) is looking for people who have been diagnosed with a rare cancer to participate in a new program designed to help scientists learn more about these diseases.

UCCC is part of the National Cancer Institute's Rare Cancer Genetics Registry, a databank of clinical information and DNA to be used by cancer scientists to study less common cancers including sarcoma, myeloma, head/neck cancer, renal (kidney) cancer, esophageal cancer, gastric cancer, pancreatic cancer, testicular cancer and fallopian tube cancer.

"These cancers, grouped together, account for more than a quarter of both cancer diagnoses and cancer deaths in the United States," said Jan Lowery, Ph.D., M.P.H., the registry's Colorado principal investigator. "But on their own, they affect very few people each year at any given cancer center, which makes it difficult for scientists to gather information on a sufficient number of cases to learn what causes these cancers, what biological markers for these cancers might be targets for treatment, or even how to prevent these cancers."

In 2007, fewer than 20,000 Americans and just 234 Coloradans were diagnosed with cancer of the plasma cell, called multiple myeloma. By pooling patient information and samples from across the country, the Rare Cancer Genetics Registry aims to collect enough DNA material in once place to provide a significant resource for U.S. cancer researchers, Lowery said.

Colin Weekes, M.D., Ph.D., is a UCCC pancreatic cancer doctor and researcher who could apply to use the patient data for research.

"These rare cancers are generally highly lethal," Weekes said. "The therapies we have available rarely result in a cure, due in part to the lack of coordinated efforts among researchers to understand how these diseases work at a molecular level. In the age of molecular cancer therapies, it's also critical that we continue to develop markers that predict which patients will respond to specific therapies. This registry will be a valuable resource for both areas of research."

Adults 18 and older who have been diagnosed with a rare or uncommon cancer since 2005 may participate in the registry. All patient information is kept private, and only approved scientists will have access to de-identified DNA samples.

If you would like to participate in the registry, please contact the University of Colorado Cancer Center at 1-877-700-0697.