The Lynch Syndrome Registry is enrolling individuals with known or suspected Lynch syndrome in a research study that collects clinical information and biological samples to help researchers learn more about Lynch syndrome with the goal of developing strategies that can improve prevention, early detection and treatment of cancer.
OUR PURPOSE
- The purpose of this research is to collect clinical information and samples from individuals with Lynch syndrome to establish a registry
- The registry will help researchers learn more about Lynch syndrome with the goal of developing strategies that can improve prevention, early detection and treatment of cancer
WHO CAN JOIN?
You are 18 years or older AND one of the following:
- You have a positive genetic mutation for Lynch syndrome
- You have a cancer with mismatch repair deficiency or microsatellite instability AND a variant of uncertain significance in a Lynch syndrome gene with a family history suggestive of Lynch syndrome
- You have been determined to be an obligate carrier for Lynch syndrome
Taking part in this research study may or may not benefit you. We hope the information learned from this research study will provide more information about development of cancer and pre-cancerous lesions in individuals with Lynch syndrome. This may lead to improvements in early detection and prevention of cancer in the future.
You will also have the opportunity to share your electronic health records (with optional selections for Apples HealthKit and Clinical Health Records)