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Lynch syndrome research registry pilot study

Surveillance for individuals at high-risk of colorectal cancer – using Lynch Syndrome patients as a model

Status
Recruiting
Phases
Unknown
Study type
Observational
Source
ISRCTN
Registry ID
ISRCTN14826039
Enrollment
300
Registered
2022-04-08
Start date
2022-11-18
Completion date
Unknown
Last updated
2025-03-17

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Cancer in patients with a confirmed Lynch Syndrome diagnosis Cancer

Interventions

A baseline health questionnaire and surveillance data will be collected, with additional data provided by NHS Digital.

Sponsors

Imperial College London
Lead Sponsor

Eligibility

Sex/Gender
All

Inclusion criteria

Inclusion criteria: 1. English participants with a confirmed genetic Lynch Syndrome diagnosis 2. Previously taken part in the CaPP3 trial 3. Consented to be contacted about participation in a national Lynch Syndrome Registry

Exclusion criteria

Exclusion criteria: CaPP3 participants who have not agreed to be contacted about registry participation

Design outcomes

Primary

MeasureTime frame
Successful collection of baseline and surveillance data for consented participants and linkage with NDRS data at 9 months

Secondary

MeasureTime frame
Frequencies and proportions assessed from data successfully collected under the primary outcome measure at 9 months, including data on those attending colonoscopy or gynaecological surveillance, tested for Helicobacter pylori, presymptomatic and those taking aspirin and at what dose/frequency (see research questions)

Countries

England, United Kingdom

Outcome results

None listed

Source: ISRCTN (via WHO ICTRP) · Data processed: Feb 4, 2026