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Hereditary cancer foundation launches Lynch Syndrome patient registry
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AliveAndKickn has announced the launch of the HEROIC Registry, a genetic database for people with Lynch Syndrome to share data and further research, according to a press release.
Lynch Syndrome, a hereditary disorder caused by a mismatch repair gene mutation that increases risk for colorectal, endometrial and other (often early-onset) cancers, is a CDC Tier 1 public health initiative genetic mutation, according to the press release. It affects one in 440 Americans, but up to 95% are undiagnosed.
“If other Lynch patients are like me they will want their data shared with researchers to get a better understanding of how to manage their condition and get involved with research studies and clinical trials,” David Dubin, founder of AliveAndKickn and three-time Lynch cancer survivor, said in the press release. “This registry will enable me as a patient to truly make a difference in the research of this condition.”
The registry will enable researchers to utilize patient data in their efforts to better understand the mutations, perform clinical trials and develop new treatments, according to the press release. Patients will have control over what data are provided.
“We need to be able to share data so that we can answer the important questions for families with Lynch Syndrome in terms of when to start screening, how frequently, and is there anything you can to do to lower your risk or things to avoid that will help you live a longer life without cancer,” Heather Hampel, MS, Licensed Genetic Counselor, Clinical Cancer Genetics Program Professor, The Ohio State University Comprehensive Cancer Center, said in the press release.
“Without data-sharing we can't answer these questions. Working together with the registry, we can change the future for the next generation; we can answer questions that are so important to your kids and your kid’s kids to keep from getting cancer and live fulfilling lives despite the diagnosis of Lynch Syndrome.”
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