Improving Lynch Syndrome Diagnosis and Care in Wales

Improving Lynch Syndrome Diagnosis & Care in Wales

Following the successful 'Understanding Genomics and Lynch syndrome in the colorectal MDT' workshops in2024, and drawing on learning from the Lynch Syndrome Quality Improvement Project in England, this work marks a key next step in improving care for people with Lynch syndrome in Wales

It aims to improve equity of support for patients through two key initiatives:

•  The establishment of Lynch Champions within MDTs (Multi-Disciplinary Teams)
• The development of a Lynch Syndrome Registry

Why Lynch Syndrome? 

Lynch syndrome is a genetic condition that can significantly increase the risk of certain cancers, particularly bowel and endometrial cancer. Around 10,000 people in Wales are thought to have Lynch syndrome—but many remain undiagnosed. Early identification and support can make a life-changing difference, enabling individuals and their families to take proactive steps to reduce their cancer risk.

What are Lynch Champions?

Lynch Champions are nominated individuals within colorectal multidisciplinary teams (MDTs) who help ensure all appropriate patients are tested for Lynch syndrome.

Their role includes:

• Monitoring referrals to ensure no one is missed
• Providing blood samples to the All Wales Medical Genomics Service (AWMGS) for genomic profiling.

This role has been vital to improving diagnosis rates in England. It also plays a key part in enabling cascade testing—helping to identify family members who may also carry the condition.

A Lynch Syndrome Registry for Wales

To improve long-term care and support, this work will also support the development of a Lynch Syndrome Registry for Wales.

The registry will be developed through collaboration between key national partners, including: 

• All Wales Medical Genomics Service (AWMGS)
• Digital Health and Care Wales (DHCW)
• NHS Wales Cancer Network 

Informed by the registry already established in England, the Welsh registry will capture key information on everyone diagnosed with Lynch syndrome. By enabling better data, more timely screening, and coordinated care, the registry represents an important step towards more proactive and personalised support for patients. 

Together, these efforts aim to significantly increase the number of people diagnosed with Lynch syndrome in Wales — enabling earlier intervention, better outcomes, and more equitable access to care. 

This work delivers on a key ambition set out in our Towards Zero Deaths from Bowel Cancer in Wales -  Case for Change, 

This work will continue to develop throughout 2025. Check back for further updates.