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People with Lynch Syndrome invited to share their experiences

We have just launched a Lynch Syndrome Patient Survey to find out more about your experiences of Lynch Syndrome diagnosis, genetic testing and management.

The survey, which takes around 10-15 minutes to complete, is aimed at anyone with a Lynch syndrome diagnosis living in England.

The survey is fully anonymous, and the results will be used to improve future care and management for Lynch Syndrome patients that meets national guidelines.

Karine Latter, member of our Patient and Public Voice (PPV) Panel who herself was diagnosed with Lynch syndrome following a routine bowel screening check, put the survey together in collaboration with our Lynch Syndrome group.

we want to understand the real experiences of people with Lynch syndrome, from diagnosis, genetic testing and management. A key aim of the East GMSA is to reduce health inequalities and ensure people have the same access to genetic testing, and the same high standard of care, no matter where in England they live or which hopsital they are treated at.

Karine Latter, PPV member who received a Lynch syndrome diagnosis just after her 60th birthday

You can take our Lynch syndrome patient experience survey here (opens in a new tab).

Please note that the survey will close on 31 January 2024.

Lynch syndrome patient experience survey