Colonoscopy check-up in people with Lynch syndrome v1.4

• Research type

  Research Study

• Full title

  Prevalence, determinants, and challenges of adherence with colonoscopy check-up in people with Lynch syndrome: a questionnaire-based study

• IRAS ID

  329468

• Contact name

  Emma C Robbins

• Contact email

  e.robbins@imperial.ac.uk

• Sponsor organisation

  Imperial College London

• Duration of Study in the UK

  1 years, 1 months, 31 days

• Research 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 CSPRG are conducting the 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 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.

  We 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 registry pilot.

  Participation involves completing the questionnaire only. The study will take approximately one year from administering the questionnaire to sharing results with participants.

• REC name

  London - Camden & Kings Cross Research Ethics Committee

• REC reference

  23/LO/0887

• Date of REC Opinion

  2 Nov 2023

• REC opinion

  Favourable Opinion