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Lynch Syndrome clinical trials

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NCT ID: NCT06126120 Enrolling by invitation - Lynch Syndrome Clinical Trials

Colonoscopy Check-up in People With Lynch Syndrome

Start date: January 17, 2024
Phase:
Study type: Observational

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.

NCT ID: NCT04197856 Enrolling by invitation - Lynch Syndrome Clinical Trials

Direct Information to At-risk Relatives

DIRECT
Start date: February 6, 2020
Phase: N/A
Study type: Interventional

This study evaluates if uptake of genetic counselling in high-risk families is increased when patients at cancer genetics clinics are being offered healthcare-assisted disclosure to at-risk relatives compared to current standard care (with family-mediated disclosure). Patients/families who have undergone a cancer genetic investigation will be invited to participate in the study. All participants will receive standard care. Half of them will in addition be offered a healthcare-assisted disclosure with the service of direct letters to identified at-risk relatives distributed by the healthcare provider. After a year we will compare the proportion of at-risk relatives who have contacted a cancer genetic clinics in each study arm.