Lynch Syndrome Pilot Registry

Overview

The Lynch Syndrome Pilot Registry is a research database that records the health information of people with Lynch syndrome. We use this data to study the medical care and patient experience of this group.

What is Lynch syndrome?

Lynch syndrome is a genetic condition that increases a person’s chance of getting some cancers including bowel cancer. It can run in families and is found with a genetic test.

There are around 6,000 people in the UK who have been tested and shown to have Lynch Syndrome. However, it is believed that there may be as many as 180,000 untested people in the UK with Lynch Syndrome.

Patients with Lynch syndrome need special health checks or monitoring tests to protect them from cancer. Many will have regular colonoscopies to check them for bowel cancer. This is known as ‘surveillance’.

What is a colonoscopy?

A colonoscopy is a type of camera test. During a colonoscopy, a doctor passes a small camera on the end of a flexible tube through the bottom and into the bowel of a patient. The doctor looks at the inside of the bowel for anything unusual. Colonoscopies can either be used to diagnose problems, or to provide treatment.

Why and how did we set up the database?

Lynch syndrome patients need surveillance tests to protect them from developing cancer. However, the surveillance of Lynch syndrome patients can vary widely across the UK. This means that some patients struggle to have their monitoring tests and risk developing cancer.

We hoped that by building the database, we could:

• Aid further research on Lynch syndrome.
• Ensure efficient monitoring of patients.
• Help to prevent cancers.

In 2022, we contacted Lynch syndrome patients who had taken part in a cancer prevention study called the Cancer Prevention Programme Project 3 (CaPP3). These patients had consented to be contacted about other studies they might be interested in. We asked them if they wanted to take part in our Lynch syndrome research.

If a patient agreed to take part, we sent them a questionnaire about their medical history. This data was logged on our secure server. Research nurses also gathered information about these patients’ previous colonoscopies and other tests.

The database was set up across four hospitals in England:

• Birmingham Women’s Hospital
• St Mary’s Hospital, Manchester
• Northern Genetics Service, Newcastle upon Tyne
• St Marks Hospital, London

What are the research aims of the study?

We want to better understand how people with Lynch syndrome are currently cared for in the UK. We want to find out about their experiences, particularly with their monitoring tests.

We hope that this research will lead to better care and experiences for people with Lynch syndrome.

Who is funding the study?

The charities 40tude and Cancer Research UK are funding this research.

What research is ongoing with the help of the database?

We have created a questionnaire for people with Lynch syndrome. It asks about their views, experiences, and challenges of having a colonoscopy. This research is important as it will help us to identify ways to improve the experience of colonoscopy for people with Lynch syndrome. We will add a summary of the research results to this page once available.