With Cancer, It's Game On
March 20, 2018 – Randell Roach
Why Therapy Pets Are So Important
February 26, 2018 – Susan McLaughlin
In Sickness and in Health
February 09, 2018 – Kristinna Abalos
Cultivating Symbiosis
January 22, 2018 – Caroline Reber
What Does it Mean to be a Cancer Survivor?
January 18, 2018 – Carly Flumer
There Is Magic in Cancer
January 08, 2018 – Emily Garnett
Finding Life's Purpose in the Craziest Circumstances
January 05, 2018 – Corine Mogenis
A Hairful Celebration
January 03, 2018 – Sandy Miliefsky
The Patient
December 19, 2017 – Karen Ribler
Every Time I Think I Have Cancer
November 01, 2017 – Christine Pereira

Lynch Syndrome Registry Sheds Light on a Driving Cause of Colorectal Cancer

BY Caitlyn Fitzpatrick
PUBLISHED May 05, 2016
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.
Be the first to discuss this article on CURE's forum. >>
Talk about this article with other patients, caregivers, and advocates in the Colorectal Cancer CURE discussion group.

Related Articles


Sign In

Not a member? Sign up now!

Sign Up

Are you a member? Please Log In