A report on the national Lynch Syndrome Transformation Project has recently been published by the International Journal of Cancer.
The national Lynch Syndrome (LS) Transformation Project was a national NHS England programme that ran from 2021 to 2025. Its aim was to make sure that people diagnosed with bowel cancer or endometrial (womb) cancer were routinely tested for Lynch syndrome, an inherited condition that increases cancer risk.
The programme was supported and delivered via the regional Genomic Medicine Service Alliances (GMSAs), working with cancer teams across England.
What is Lynch syndrome?
Lynch syndrome is a genetic condition that runs in families. People with Lynch syndrome have a higher chance of developing certain cancers, especially bowel and womb cancer. If Lynch syndrome is identified earlier, showing that they are at increased risk of developing cancer, people are more informed in relation to their health, and have regular checks to inform health and lifestyle choices which in turn supports prevention of the disease developing.
Overview to the programme
Before this programme, diagnosis of Lynch syndrome was low, even though national guidance said that all new bowel and womb cancer patients should be tested. Rates of testing varied across the country, with healthcare professionals unsure as to who was responsible for requesting testing.
What did the programme do?
The programme helped cancer teams across England to improve testing by appointing Lynch syndrome champions in cancer teams, training doctors, nurses, and pathologists, and by supporting hospitals through the regional Genomic Medicine Service Alliances. It also helped teams offer genetic testing directly, without long waits, and created a national registry to record everyone diagnosed with Lynch syndrome.
More than 275 Lynch syndrome champions were trained, covering over 95% of cancer teams in England.
What changed?
The programme made a major difference nationwide. Testing of cancer samples increased from 43% to over 94% in bowel cancer and from 19% to over 94% in womb cancer.
The number of people diagnosed with Lynch syndrome each year rose from 545 in 2020 to 1,394 in 2024. This is a 255% increase, far above the original target. Genetic test results were much faster when cancer teams did test directly.
Why is this important?
Because of this programme, more people now know they have Lynch syndrome and more lives can be saved through prompt treatment and prevention. Over 9,000 people are now recorded in a national Lynch syndrome register. This register supports the first national bowel screening programme for people with Lynch syndrome.
Who led the programme?
The project was led by a national clinical leadership team working closely with the regional Genomic Medicine Service Alliances.
The national clinical co-leads were Kevin J. Monahan and Adam C. Shaw, from the North Thames and South East Genomic Medicine Service Alliances, respectively. Within each alliance, there were regional leads, regional lynch syndrome nurses, and aligned nursing leadership.
For the East, the team included East Lynch Syndrome Leads Dr Ruth Armstrong, Consultant in Clinical Genetics at Cambridge University Hospitals, and Vicki Kiesel, Lead Genetic Counsellor at the Leicestershire, Northamptonshire and Rutland (LNR) Genomic Medicine Service.
Overall impact
The national Lynch Syndrome Transformation Project successfully brought genetic testing into everyday cancer care. It reduced unfair differences across the country, improved early diagnosis, and created long-lasting national systems to protect patients and families for the future.
