AURORA, Colo. (July 9, 2010)—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, PhD, MPH, 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.”

For example, in 2007 fewer than 20,000 Americans and just 234 Coloradoans 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 US cancer researchers, Lowery said.

Colin Weekes, MD, PhD, 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,” said Weekes. “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.”

People age 18 and older who have been diagnosed with a rare or uncommon cancer since 2005 can participate in the registry. They will asked to complete a questionnaire and donate genetic material — a sample of saliva or about a tablespoon of blood — for scientists to use in future research studies. They will be asked to give the registry permission to confirm their cancer diagnosis by checking their medical record, and to update their medical history and contact information each year.

As scientists are approved to conduct research focused on a specific cancer type, the Rare Cancer Genetics Registry will contact the participant for permission to use their sample in those studies. 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.

About the University of Colorado Cancer Center

The University of Colorado Cancer Center is the Rocky Mountain region’s only National Cancer Institute-designated comprehensive cancer center. NCI has given only 40 cancer centers this designation, deeming membership as “the best of the best.” Headquartered on the University of Colorado Denver Anschutz Medical Campus, UCCC is a consortium of three state universities (Colorado State University, University of Colorado at Boulder and University of Colorado Denver) and five institutions (The Children’s Hospital, Denver Health, Denver VA Medical Center, National Jewish Health and University of Colorado Hospital). Together, our 440+ members are working to ease the cancer burden through cancer care, research, education and prevention and control. Learn more at

Contact: Lynn Clark, 303-724-3160, [email protected]

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