Transformation Projects

Monogenic Diabetes

Improving the identification and treatment of monogenic diabetes.

Monogenic Diabetes

Project Background

Monogenic diabetes is a rare form of diabetes caused by a mutation in a single gene and can often be misdiagnosed as type 1 diabetes. It is estimated that ~12,000 people in England may have monogenic diabetes, but if it is undetected patients can struggle to manage their glucose levels. Genetic testing can provide a diagnosis. 

Accurate diagnosis and identification of monogenic diabetes can often lead to treatment changes that improve diabetes control and other outcomes. Accurate diagnosis can lead to earlier changes and better outcomes for patients, often eliminating the need for insulin.

The genetic test to identify monogenic diabetes is nationally commissioned for NHS patients across England via the National Genomic Test Directory.

Project Overview

The North Thames GMS has contributed to a national transformation project which aims to reduce variation in the diagnosis of monogenic diabetes to ensure the expected 8 in 100,000 cases are identified.

This is being achieved by reviewing the equity of access and developing testing pathways. We are working across workforce groups to ensure clinical champions and trained nurses are in place within each diabetes service in the region and to ensure appropriate training is provided.

Progress to Date

As of June 2022, 115 out of 129 NHS Trusts have a Consultant champion and 87 have a Nurse champion. Three training and education courses ran in 2021/22 with 815 delegates attending and an online course developed with 269 registrations.

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