AQO 983/22-27

Mr Eóin Tennyson
Alliance Party
Upper Bann

Tabled Date: 03/10/2024
Answered On Date: 15/10/2024
Priority Written: No

Question:
To ask the Minister of Health whether he plans to introduce a Lynch syndrome registry.

Answer:

Lynch syndrome is an inherited condition that increases your risk of colorectal cancer, endometrial cancer and several other cancers. Doctors estimate that around 3 out of every 100 colon cancers or endometrial cancers are caused by Lynch syndrome. Lynch syndrome also causes cancers to occur at an earlier age than they might in the general population.

It is a central tenet of the NI Cancer Strategy to improve early diagnosis. It is therefore important to identify individuals and families with Lynch syndrome so that risk-reducing measures can be taken to address the elevated risk and earlier onset of bowel and other cancers. These include surveillance colonoscopies and gynaecological follow up.

In NI the introduction of testing for Lynch syndrome was successfully implemented in 2019. Our current practice is to test for Lynch syndrome in people with colorectal cancer at ‘high risk’ of the syndrome. This includes people who have a family history of colorectal cancer and those with an early age of onset (younger than 50 years) of colorectal cancer. Testing is also offered to appropriate endometrial cancer patients as part of the Lynch service.

I understand that early discussions are underway to assess the feasibility for the establishment of a Northern Ireland Lynch register with input from Queens University Belfast, the NI Cancer registry and HSC staff.