Lynch Syndrome Research Registry v1.0
Research type
Research Study
Full title
Surveillance for individuals at high-risk of colorectal cancer – using Lynch Syndrome patients as a model
IRAS ID
295605
Contact name
Amanda Cross
Contact email
Sponsor organisation
Imperial College London
Clinicaltrials.gov Identifier
14826039, ISRCTN
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Lynch Syndrome (LS) is an inherited disorder that is associated with an increased risk of several cancers, particularly bowel cancer, as well as cancer of the womb. In the UK, there are only 6,000 known LS patients, however, it is estimated that there are ~176,000 undiagnosed cases. Given their high risk of bowel cancer, these patients require close monitoring, also known as ‘surveillance’, by colonoscopy - a thin tube with a camera on one end which is used to examine the bowel lining.
Despite national guidelines, management of LS patients is not well-organised and varies significantly throughout the UK, so many of these patients are not getting the surveillance they need to protect against bowel cancer. To address this variability and to support the national guidelines, several experts in the field have called for a national registry to ensure that all LS patients have access to the timely surveillance they need.
We will develop an LS registry with multiple aims. It will be used to review and improve how LS patients are managed; it will provide data to better support the national screening programme's upcoming role in taking on and managing LS surveillance; and it will provide a unique resource to conduct and support future research into LS.
This pilot study phase funded by 40tude and Cancer Research UK will help us to answer several important research questions around how LS patients are currently managed, as well as assisting us with optimising the data collection process and functionality of the registry for both users and researchers. LS patients who have previously taken part in the Cancer Prevention Project 3 (CaPP3) trial will be recruited from five sites in England over 9-months. A baseline health questionnaire and surveillance data will be collected, with additional data provided by NHS Digital.
REC name
North East - Newcastle & North Tyneside 2 Research Ethics Committee
REC reference
22/NE/0087
Date of REC Opinion
27 May 2022
REC opinion
Further Information Favourable Opinion