HAWORTH, N.J., Feb. 9, 2016 /PRNewswire-USNewswire/ -- The HEROIC Registry is the first of it's kind patient-centric genetic database for individuals and families with a Lynch Syndrome genetic mutation. It will enable patients to take an active role in furthering research into this CDC Tier 1 public health initiative genetic mutation.
When an individual participates in the HEROIC Registry, they are providing information to help AliveAndKickn advocate for them. Researchers can access the data to develop new treatments, understand Lynch mutations, write medical papers, conduct further studies and clinical trials. What people make available is set by them.
"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. This registry will enable me as a patient to truly make a difference in the research of this condition," says David Dubin, Founder of AliveAndKickn and three-time Lynch cancer survivor.
"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 any thing you can to do to lower your risk or things to avoid that will help you live a longer life without cancer. 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." Heather Hampel, MS, LGC, Licensed Genetic Counselor, Clinical Cancer Genetics Program Professor, The Ohio State University Comprehensive Cancer Center
AliveAndKickn's mission is to improve the lives of individuals and families affected by Lynch Syndrome and associated cancers through research, education, and screening. Lynch Syndrome is a hereditary disorder caused by a mutation in one of several mismatch repair genes in which affected individuals have a higher than normal chance of developing colorectal cancer, endometrial cancer, and various other types of aggressive cancers, often at a young age. One in every 440 Americans has Lynch syndrome, but as much as 95% of these people have not been diagnosed. http://aliveandkickn.org
Robin Beth Dubin