PHILADELPHIA, PA, March 10, 2022 (GLOBE NEWSWIRE) -- Cancer Support Community (CSC) has partnered with the Colorectal Cancer Alliance (Alliance) to expand its innovative, flagship research study, the Cancer Experience Registry (CER). The registry provides health care workers, researchers, and policymakers with data to enact change and create better outcomes for this generation of patients, caregivers, and survivors, and the next. The online survey for people living with cancer now includes questions specifically designed to capture the experience of those affected by colorectal cancer (CRC).
The partnership and expansion come in time for March, National Colorectal Cancer Awareness Month, which brings attention to the second deadliest cancer in the United States. An estimated 149,500 people will be diagnosed with CRC in 2022 alone. Every March, CSC, the world’s largest provider of cancer support with a network of 175 locations, joins the Alliance and other stakeholders in spreading awareness about colorectal cancer screening, prevention, and treatment.
“Colorectal cancer is such a silent killer and most of the reason for that is people are unaware of the signs, history and severity of this disease,” said Jenna Scott, an Alliance volunteer and colorectal cancer patient and advocate. “Knowledge is key. The more we as patients speak up about what we have gone through… the more others will be educated on what they can do to help us or help themselves.”
Scott was diagnosed with stage IV (metastatic) colorectal cancer at 31 years old. Cases in people under age 50 are considered young-onset colorectal cancer. Since the mid-90s, rates of young-onset colorectal cancer have increased 1.5% each year. This increase in young-onset colorectal cancer has led to the recommended age for screening being lowered to 45, five years younger than previously suggested for individuals of average risk.
The CER asks about physical health, social well-being, work, and stress, as well as treatment decision-making, the financial impact of cancer, and more. The Alliance, the nation’s leading non-profit dedicated to ending CRC, will use the data to better support patients and caregivers, inform its research strategy, and heighten awareness for issues experienced by CRC patients.
“The only way to create change is to do the work and research is the answer,” Scott added.
First launched in 2013, the CER has engaged nearly 19,000 patients, survivors, and caregivers. With the addition of colorectal cancer specific questions, the CER now includes tailored questions for 14 specific cancer diagnoses. The CER remains open to all people living with cancer and to friends or family who have provided care. To learn more about the survey, visit: https://www.cancersupportcommunity.org/registry
About the Cancer Support Community
The Cancer Support Community (CSC) is a global nonprofit network of 175 locations, including CSC and Gilda's Club centers, hospitals and clinics, and satellite locations that deliver $50 million in free support services to patients and families. In addition, CSC administers a toll-free helpline and produces award-winning educational resources that, together with the locations, reach more than one million people each year. Formed in 2009 by the merger of The Wellness Community and Gilda’s Club, CSC conducts cutting-edge research on the emotional, psychological, and financial journey of cancer patients. CSC also advocates at all levels of government for policies to help individuals whose lives have been disrupted by cancer. In January 2018, CSC welcomed Denver-based nonprofit MyLifeLine, a digital community that includes nearly 40,000 patients, caregivers, and their supporters that will enable CSC to scale its digital services in an innovative, groundbreaking way. For more information, visit www.CancerSupportCommunity.org. So that no one faces cancer alone®.
About the Colorectal Cancer Alliance
The Colorectal Cancer Alliance is a national nonprofit committed to ending colorectal cancer. Working with our nation of passionate allies, we diligently support the needs of patients and families, caregivers, and survivors; eagerly raise awareness of preventive screening; and continually strive to fund critical research. As allies in the struggle, we are fiercely determined to end colorectal cancer within our lifetime. For more information, visit ccalliance.org.
