Welcome to the Lynch syndrome registry pilot study website!

















The ‘Colonoscopy check-up in people with Lynch syndrome’ study.

At the beginning of 2024, we invited people from the Lynch syndrome research registry pilot study, who met certain eligibility criteria, to complete a questionnaire investigating the views, experiences, and challenges of having colonoscopy check-up. A total of 247 individuals were eligible and were sent the questionnaire. We received responses from 231 individuals, which is an incredible response rate of 94%. Thank you very much to all participants for contributing their time and sharing their views and experiences with us.

We have prepared a summary of the questionnaire results, which can be downloaded below. The summary shows responses to the questions in visual ways and ends with highlighting areas that need improvement and further research.

It is important to keep in mind that this questionnaire was sent to people from four CaPP3 (Cancer Prevention Project 3, https://www.capp3.org/ ) sites (Manchester, Newcastle, Birmingham, and London), so we did not capture the views, experiences, and challenges of having colonoscopy check-up for people receiving care elsewhere in the UK. Additionally, as we sent out the questionnaire at the beginning of 2024, most participants would have completed it before having their first colonoscopy check-up through the new Lynch syndrome-Bowel Cancer Screening Programme (BCSP). This started being introduced in April 2023; however, most participants would have first been invited for a colonoscopy through the Lynch syndrome-BCSP in 2024, because the programme was not fully set up right away and because many participants would not have been due a colonoscopy between April 2023 and early 2024. Therefore, further research is needed to understand the views and experiences of the Lynch syndrome-BCSP for people from all over the UK. This will be the focus of new studies.

You can download the summary of the questionnaire results here.