One in every 440 Americans has Lynch syndrome, yet an estimated 95 percent of people do not know that have it. AliveAndKickn is an organization that strives to shine the spotlight on this condition and improve the lives of those who have it.
Lynch syndrome — also called hereditary nonpolyposis colorectal cancer (HNPCC) – is an inherited condition which increases the risk for different types of cancer, often times colorectal cancer. A mutation in the MLH1, MSH2, MSH6, PMS2 or EPCAM gene could indicate Lynch syndrome.
AliveAndKickn developed the HEROIC Registry, a patient-centric genetic database which allows patients living with Lynch syndrome to share their personal experiences. After working with partners and medical advisory board for most of 2015, the registry went live this past February.
“Many individuals, when first learning of a Lynch diagnosis, do not even have access to the recommended clinical care and screenings,” Dave Dubin, co-founder of AliveAndKickn and three-time Lynch cancer survivor, told CURE. “We recognized that there is a need for increased research studies and clinical trials focusing on Lynch syndrome, but no real aggregation of the patient data necessary to accomplish that.”
Since the HEROIC Registry provides real-life medical information from actual patients, the data is used to help researchers develop new treatments and understand the genetics behind Lynch syndrome. At the end of the day, the initiative is most beneficial to the people who need it — the patients.
“By participating in the registry, a patient can share as much health information as they want,” continued Robin Dubin, executive director of AliveAndKickn. “They control who views it, what information they would like to share and which research studies they are willing to participate in.”
Lynch syndrome has been identified by the Centers for Disease Control and Prevention (CDC) as a Tier 1 public health initiative. Since this is a genetic condition, if a parent has it the chances their child having it is 50 percent. So if there was a time to know your family history — this is it.
Visit AliveAndKickn.org to learn more and sign up for the HEROIC Registry.