Colonoscopy Check-up in People With Lynch Syndrome

NCT06126120 | Completed

• 1 other identifier: IRAS 329468
• Study Type: observational
• Target: 231
• Locations: 1 country
• Sites: 1

Brief Summary

Lynch Syndrome, an inherited condition, increases bowel cancer risk. People with Lynch Syndrome are recommended to have regular colonoscopies where a camera in a tube is used to look inside the bowel for cancer and for polyps (growths that sometimes can become cancerous). UK guidelines recommend that people with Lynch Syndrome have colonoscopy check-up every 2 years after reaching a certain age; however, they face many challenges which make it difficult to have the recommended check-up. Among a subset of people with Lynch Syndrome in England, this study will investigate the:

• percentage who are having colonoscopy check-up as recommended by UK guidelines
• factors influencing whether a person is more/less likely to have the recommended colonoscopy check-up
• views, experiences, and challenges of living with Lynch Syndrome and colonoscopy check-up This study will collect information from people in the 'Lynch Syndrome registry pilot' using a questionnaire. The Cancer Screening and Prevention Research Group (CSPRG) at Imperial College London are conducting the Lynch Syndrome registry pilot, which is recruiting people with Lynch Syndrome who are aged \>18 years and in the Cancer Prevention Programme 3 (CaPP3) trial, from Nov 2022-Nov 2023. This study will include people in the Lynch Syndrome registry pilot who provided consent on the registry pilot consent form to be contacted about future research and are aged ≥25 years. People who have had previous surgery to remove their rectum will be excluded. The investigators will use the 'Views, experiences, and challenges of colonoscopy check-up' questionnaire, together with a few pieces of additional information previously collected as part of the Lynch Syndrome registry pilot. Participation involves completing the questionnaire only. The study will take approximately one year from administering the questionnaire to sharing results with participants.

Conditions

Lynch Syndrome

Keywords

Lynch Syndrome; Colonoscopy; Surveillance

Outcome Measures

Primary Outcomes (1)

• Participant non-adherence to 2-yearly colonoscopy check-up.

  Participant non-adherence to 2-yearly colonoscopy check-up will be assessed on a single occasion, considering participants' three most recent colonoscopy check-ups, measured as a percentage.

  1 day

Secondary Outcomes (1)

• The four most important challenges to having colonoscopy check-up for participants.

  1 day

Eligibility Criteria

• Age: 25 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

This study will include people who are in the Lynch Syndrome registry pilot and meet the eligibility criteria for the present study. The Lynch Syndrome registry pilot is recruiting people with Lynch Syndrome who are aged \>18 years and in the CaPP3 trial.

You may qualify if:

• People in the Lynch Syndrome registry pilot who have provided consent to be contacted about future research and are aged ≥25 years

You may not qualify if:

• People who have had surgery involving removal of their rectum

Sponsors & Collaborators

• Imperial College London: lead

Study Sites (1)

Cancer Screening and Prevention Research Group (CSPRG), Department of Surgery and Cancer, Queen Elizabeth The Queen Mother (QEQM) Building, St Mary's Hospital, Imperial College London

London, W2 1NY, United Kingdom

Location

MeSH Terms

Conditions

Colorectal Neoplasms, Hereditary Nonpolyposis

Condition Hierarchy (Ancestors)

Colorectal Neoplasms; Intestinal Neoplasms; Gastrointestinal Neoplasms; Digestive System Neoplasms; Neoplasms by Site; Neoplasms; Neoplastic Syndromes, Hereditary; Digestive System Diseases; Gastrointestinal Diseases; Colonic Diseases; Intestinal Diseases; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; DNA Repair-Deficiency Disorders; Metabolic Diseases; Nutritional and Metabolic Diseases

Study Officials

• Amanda J Cross, PhD

  Imperial College London

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: November 3, 2023
• First Posted: November 13, 2023
• Study Start: January 17, 2024
• Primary Completion: April 4, 2024
• Study Completion: December 31, 2024
• Last Updated: April 30, 2025

Record last verified: 2025-04

Data Sharing

• IPD Sharing: Will not share

Locations

GB (1)