National GMSA Transformation Project: Lynch Syndrome

Lynch Syndrome

Lynch Syndrome (LS) is an inherited condition which results in an increased risk of certain cancer types. The main concerns are colorectal and endometrial cancer. There is also an increased risk to other cancers, but they are less frequent. People with LS have up to an 80% risk of developing colorectal cancer in their lifetime and, in women, up to a 60% risk of developing endometrial cancer.

In total LS affects approximately 1 in 350 to 1 in 400 people, with 200,000-300,000 people likely to have this condition in the UK. However, it is estimated that only 5% of people with LS in the UK have been diagnosed.

Identifying people with LS provides the opportunity to detect cancers at an earlier stage through enrolment into screening programmes, and prevent cancers through risk reduction techniques including colonoscopy, prophylactic surgery and chemoprophylaxis with aspirin.

A diagnosis of LS can also influence management plans for people who develop cancer, including impacting the surgical approaches chosen and the use of specific immunotherapy and chemotherapy treatments, and may impact access to emerging therapies.

In addition to preventing cancer and maintaining the health and quality of life of patients and families with LS, there is consistent evidence of the cost-effectiveness of a structured diagnostic pathway in patients with LS following a diagnosis of cancer, linked to cascade testing in families.

Progress to date

Nationally, over 200 MDT Lynch Champions have been appointed to be responsible for Lynch testing pathways across their geographies. These Champions are supported by a network of Regional Lynch Nurses and Clinical Project Leads and are a central member of the Regional Expert Networks that are being established.

A national forum with regional project teams, MDT Champions, Cancer Alliance representatives and other key stakeholders convenes on a regular basis to facilitate discussion of common issues and shared solutions.

The national project leadership team have collaborated with the NDRS to deliver a Lynch data dashboard on CancerStats2 (to request access follow this instructions), linking national dataset to provide regional and Provider level performance monitoring at each stage of the Lynch testing pathway, including MMR, BRAF and MLH and germline genetic testing. The current full complement of NDRS data includes all patients diagnosed in 2019 with endometrial or colorectal cancers. Although this baseline data shows low access to testing, more recent self-reported data collected by this project via a national survey indicates that this will have increased over the past few years. The NDRS plan to provide more contemporary data for Lynch Syndrome testing and GMSAs are working with GLHs to access other datasets and MDTs are completing local audits to continue monitoring geographical variation and measure impact of project activities on equity of access to testing and appropriate interventions.

How people will be identified & invited to the programme

Clinical genetics departments will ensure that anyone with a diagnosis of Lynch syndrome is registered in the NBSC. Even if you are consenting patients for genetic testing for Lynch syndrome, you will always refer patients to your linked clinical genetics department for a review and cascade testing. This will ensure that all patients are enrolled into the program, so cancer MDTs will not be expected to do this.

Clinical genetics departments will securely provide the National Disease Registration Service (NDRS) with details of people diagnosed with Lynch syndrome. NDRS then provide the screening programme with a list of people who need screening. This ensures people diagnosed with Lynch syndrome receive high quality care.