Central and South Lynch Syndrome Regional Expert Network

Purpose

The CAS Lynch Syndrome Regional Expert Network (REN) provides specialist, multidisciplinary guidance on the diagnosis and management of individuals with known or suspected Lynch syndrome across the Central and South (CAS) region.

Background

Lynch syndrome (LS) is a common inherited condition, affecting around 1 in 400 people and increasing the risk of several cancers, including colorectal, endometrial, and ovarian. Despite its prevalence, only a small fraction of affected individuals are currently diagnosed. The NHSE LS Transformation Project, delivered through the CAS Genomic Medicine Service Alliance (GMSA), aims to address this by supporting earlier diagnosis, improved care pathways, and multidisciplinary collaboration.

Our Aims

The CAS LS REN exists to ensure equitable access to expert care for the 10.5 million people in our region. The network supports Trusts in delivering high-quality LS services, offers clinical guidance, promotes consistency across pathways, and works to improve lifelong care for individuals with LS.

What We Do

• Offer expert advice on complex LS cases through virtual MDT meetings
• Support clinicians delivering ‘mainstreamed’ genetic testing
• Link LS diagnoses with appropriate genetic service pathways
• Maintain clear governance and quality monitoring
• Provide clinical guidance on variant interpretation, surveillance, family planning, and prophylaxis
• Signpost clinical trials and ensure consistent care delivery across the region
• Expedite implementation of new guidelines and clinical practice guidelines across the CAS region

Network Structure & Operations

• Multidisciplinary team including genetics, gastroenterology, gynaecology, nursing, pathology, and oncology
• Quarterly virtual MDT meetings via Microsoft Teams (frequency subject to change based on need)
• Coordinated support via a dedicated Network Pathway Coordinator
• Annual review of network function and Terms of Reference

Referrals & Contact

Referrals are accepted via secure NHS email or a dedicated portal using our standard referral form. Cases are reviewed when additional support is needed for diagnosis or management. The network also provides ad hoc clinical guidance and variant interpretation via email.

CAS Lynch Regional Expert Discussion Proforma

Please send completed proforma to [email protected]

Referrals received enable discussion at the CAS LS regional expert network MDT. Patients will not be listed for discussion in the absence of sufficient clinical information.

Membership

The CAS LS Regional Expert Network committee includes: