What is the HEROIC Registry?
The HEROIC Registry is the first of it's kind patient-centric genetic database that will enable patients to take an active role in furthering research into this CDC Tier 1 public health initiative genetic mutation. The HEROIC Registry allows patients to contribute medical information and their experiences living with Lynch Syndrome and its associated cancers to help researchers develop new treatments, understand the various Lynch genetic mutations, write medical papers and conduct further studies and clinical trials. Your data can shape the types of research studies to be conducted that are most beneficial to you – the patient.
Why is this important?
One in every 279 Americans has Lynch syndrome, but as much as 95% of these people have not been diagnosed. Many individuals with a Lynch mutation develop related cancers at very early ages, much younger than the general population. If you have a parent with a Lynch mutation you have a 50% likelihood of inheriting that mutation. Knowing your family cancer history can help determine if you are at risk.
State of the Art Technology
With today’s technology, patients are no longer passive bystanders in managing their condition. They can now play an active role in the research process, sharing insights, experiences and valuable health information about Lynch Syndrome and its associated cancers that can lead to new discoveries.
Your Privacy is Important
You can share as much of your health information as you want, when you want, and with whom you want. You control who views it, what information you’d like to share and which research studies you’re willing to participate in. Ensuring that your medical data remains secure is our utmost priority. We protect your privacy with cutting-edge technology.
The HEROIC Registry Research Goals
Your medical data is incredibly valuable. By aggregating large amounts of data from thousands of patients living with Lynch, we are able to analyze the conditions relevant to specific mutations and help answer questions most important to patients. Your data can shape the types of research studies to be conducted that are most beneficial to you – the patient.
