NICE recommends expanding Lynch syndrome testing
Wednesday 28 October 2020
Today the National Institute for Health and Care Excellence (NICE) recommends expanding the Lynch syndrome testing programme in England and Wales.
Lynch syndrome is a genetic condition that can increase the lifetime risk of bowel cancer to up to 80%, as well as many other cancers.
In February 2017, NICE published guidance for all bowel cancer patients to be tested for Lynch syndrome, and today the institute are recommending that people with womb cancer (endometrial) are to be tested too.
An estimated 200,000 people have Lynch syndrome in the UK but a staggering 95% of those do not know they have it; meaning opportunities to save lives from a range of cancers are being missed. This NICE recommendation should go a long way in addressing this problem.
Professor Emma Crosbie, who led this research at The University of Manchester, estimates if the guidelines were fully implemented that roughly 1,000 additional people per year in England and Wales may be diagnosed with Lynch syndrome.
Following a positive result, the patient can be placed on regular surveillance so that cancers, such as bowel cancer, can be detected earlier when it is more treatable and chances of survival is high. As it’s a genetic condition their families will be tested too and if they carry the faulty gene they can benefit from regular surveillance.
Genevieve Edwards, Chief Executive at Bowel Cancer UK, said: “This excellent decision will undoubtedly save lives from bowel and other cancers by identifying more people at risk through Lynch syndrome.
“But we know that not all hospitals are testing eligible patients today because of a lack of resources to do so. Health bodies must commit to the funding and staff needed to implement this NICE guidance. It’s a very small price to pay to save lives.”
- Find out more about Lynch syndrome and other genetic conditions
- Read more about our Lynch syndrome campaign to ensure people with bowel cancer and their loved ones are tested for the genetic condition
- Become a campaign supporter and help us lead the change for people with Lynch syndrome
