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Chronic Myeloid Leukemia: Patient Experience Not Well Understood
Date:10/24/2013

Washington, D.C. (PRWEB) October 24, 2013

The Cancer Support Community's Research and Training Institute and The Leukemia & Lymphoma Society (LLS) have joined forces to launch the Cancer Experience Registry: Chronic Myeloid Leukemia. According to LLS's Facts 2013 booklet, there will be 5,920 new cases of chronic myeloid leukemia (CML) diagnosed in the U.S. this year, making it a rare form of cancer. However, thanks to groundbreaking research advances, supported in part by LLS funding, there are now several effective therapies to treat patients with CML, and a growing number of people are living with the disease.

“CML patients are living longer, fuller lives due to treatment advances, but we believe that survivorship comes with an array of physical and psychosocial issues. Patients will tell us more about these issues and their impact through the Cancer Experience Registry,” said Louis DeGennaro, Ph.D., LLS’s chief mission officer.

Called the Cancer Experience Registry, the global project has already collected information on approximately 5200 people who have volunteered to share their cancer journey by answering questions about their experiences. The new CML component of the registry is an effort to learn more about the specific social and emotional needs of this unique group.

“We are excited about partnering with the Cancer Support Community on this important project,” said Clare Karten, senior director, patient engagement for LLS. “Joining forces adds to our understanding about patients’ experiences and gives us the opportunity to work together with patients to affect change that will improve their quality of life.”

According to Joanne Buzaglo, Ph.D., vice president, research and training for the Cancer Support Community, “The partnership between LLS and CSC truly allows us to combine the expertise and reach of each organization, enabling us to apply learning from the registry to s
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