Patient Experience With CLL Not Widely Discussed

Cancer Support Community tackles the CLL experience in new cancer experience registry.
PUBLISHED December 10, 2015
WASHINGTON - (May 26, 2015) - The Cancer Support Community (CSC), an international nonprofit dedicated to providing support, education and hope to people impacted by cancer, announced today a new Registry specifically for people with chronic lymphocytic leukemia (CLL). This addition to CSC's Cancer Experience Registry will explore details regarding the treatment, management and perceptions surrounding a cancer that will impact over 106,000 people in the U.S. this year.

"We are pleased the reach of the Cancer Experience Registry is expanding." said Kim Thiboldeaux, CEO of the Cancer Support Community. "The data gathered from this new Registry will shed light on the full impact of CLL, while providing a support network for people living with this disease."

"We're proud to sponsor the development of this Registry and applaud CSC for this initiative," said Cindy Guzzo, Vice President of Medical Affairs at Janssen Biotech. "While CLL is one of the most common blood cancers, it is still considered a rare disease, which means the information gathered in the Registry is extremely important."

The Cancer Support Community introduced the Cancer Experience Registry as a way to give a voice to people living with cancer and to convey the specific emotional, financial and social impacts of living with cancer to the cancer community at large. The CLL Registry is the ninth in a series of specialty Registries reaching into specific cancer types. In addition to the Cancer Experience Registry which is open to anyone with any type of cancer, there are Registries for patients with breast cancer, metastatic breast cancer, multiple myeloma, chronic myeloid leukemia, lung cancer and melanoma. Caregivers are also invited to participate by joining the Cancer Experience Registry: Caregivers and Multiple Myeloma Caregivers.

"Registries provide important information about the natural history of a disease and help clinicians better understand how to appropriately treat patients," said Elizabeth Faust, Ph.D., Head of Medical Affairs at Pharmacyclics. "We believe that the insights gathered from this CLL-focused Registry will enhance CLL treatment."

The Cancer Experience Registry: Chronic Lymphocytic Leukemia is made possible thanks to a generous sponsorship from Janssen Biotech, Inc. and Pharmacyclics.

For more information on the Cancer Experience Registry: CLL and Cancer Experience Registry: Caregivers, please visit www.CancerExperienceRegistry.org.
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