About the Study
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 is eligible to join the Lynch Syndrome Registry?
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
Why should I join?
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.
What is involved?
This research study involves providing your medical history and samples including blood, urine and stool specimens. Medical history such as personal and family health history and cancer screening procedures will be collected annually to provide comprehensive updates to the registry. Serial sample collections may be collected yearly and analyzed for changes that may suggest disease.
Clinical Data Collection:
- Complete an initial survey to collect information on your family and personal history
- Complete an annual follow-up survey to collect information regarding any changes to your family or personal history
Biobank/Specimen Collection:
Donate blood samples annually (no more than 3 and 1/2 tablespoons per year)
Donate any of the following samples, if applicable:
- Urine samples either in clinic or at home with a urine collection kit
- Stool samples using a home collection kit and mail to the study team
- Biopsy samples from screening procedures
- Tissues samples from screening procedures or surgery
Ready to join?