The Colorectal Cancer Alliance is calling on allies to participate in its 2019 Young-Onset Colorectal Cancer Survey. The survey enables the Alliance to learn about and track the self-reported medical, psychosocial, and quality-of-life experiences of patients, survivors, and caregivers. It is available now and will remain open through July.
A data-based understanding of young-onset colorectal cancer, in the form of thousands of aggregated voices, can drive improvements in prevention, treatment, and survivorship, said Ronit Yarden, PhD, the Alliance’s Director of Medical Affairs.
“When it comes to raising awareness about this disease and changing how young-onset colorectal cancer is viewed, whether in neighborhood primary care offices or big pharmaceutical companies, data is the most powerful tool,” Dr. Yarden said. “It’s important our allies participate, as it’s their individual voices that create the data that inspires change.”
Young-onset colorectal cancer is often misdiagnosed, leading to delays in treatment, and those affected by it sometimes face issues different from their over-50 peers, previous surveys have found. This year’s survey seeks to further understand those issues.
Colorectal cancer is considered young-onset if it is diagnosed before age 50. In the United States, 11% of colon cancer diagnoses and 18% of rectal cancer diagnoses occur in those under 50.
The 2018 Young-Onset Colorectal Cancer Survey Report showed an acute need to increase understanding about young-onset colorectal cancer among the general population and physicians—especially primary care doctors, who often first see patients.
“We know the young-onset colorectal cancer journey is often fundamentally different from that of average-age patients, from diagnosis to survivorship,” said Kim Newcomer, Manager of the Alliance’s Never Too Young program. “The more the Alliance can learn about this often-overlooked group, the more we can do to help them.”
Data from the 2019 survey will be analyzed by the Alliance to create a report detailing results, with distribution expected in the fall.
The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.