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New international medical code launches for presymptomatic type 1 diabetes

JDRF-funded researchers from the University of Birmingham have joined forces with NHS England to develop a diagnostic code for use on electronic medical records of people in the earliest stages of type 1 diabetes, allowing them to receive better, more timely healthcare and access to emerging treatments.
Content last reviewed and updated: 13.05.2024

A female doctor works at a laptop on a table. She is wearing a shirt and glasses with a stethoscope around her neck.

A new code for presymptomatic type 1 diabetes has today been added to SNOMED CT, a standardised, international, multilingual set of clinical healthcare terminology. SNOMED codes are added to electronic health records to identify what conditions a person has. It is the most comprehensive and precise clinical health terminology system in the world.

Type 1 develops in stages

Type 1 diabetes develops gradually, and this progression occurs in three stages, with the first two stages called presymptomatic type 1 diabetes. People with presymptomatic type 1 diabetes have biological markers of type 1 diabetes, known as autoantibodies, which show the immune attack that destroys insulin-producing beta cells has begun. As the symptoms of type 1 are not present at this stage, we rely on screening programmes such as the ELSA study, which are funded by charities like JDRF, for early detection.

Transforming type 1 diabetes research

Dr Lauren Quinn at the University of Birmingham, who co-leads the ELSA study and helped develop the new medical code, said: “The introduction of this SNOMED code allows researchers to identify people who could benefit from novel therapies to delay the onset of type 1 diabetes and recruit them to clinical trials of immunotherapies. This will transform type 1 diabetes research by fast-tracking recruitment, unravelling how the condition develops and progresses, and bringing us closer to licensed disease-modifying treatments in type 1 diabetes.”

Better monitoring and diagnosis

Dr David Shukla, a GP and Clinical Research Fellow who helped develop the new SNOMED code, said: “The inclusion of a code for the diagnosis of presymptomatic type 1 diabetes will highlight to healthcare professionals involved in their care the individuals who are at high risk of developing type 1 diabetes. This will help ensure that when these people progress and develop symptomatic type 1 diabetes, it will be picked up and treated at a much earlier stage.

This reduces the risk of them presenting or being diagnosed late and developing diabetic ketoacidosis, an emergency complication of type 1 diabetes that can be fatal. This timely pick up and initiation of prompt treatment will lead to substantial improvements in their diabetes and future care.”

A vital step for early detection

Hilary Nathan, Director of Policy and Communications at JDRF UK, said: “This recognition of presymptomatic type 1 diabetes with a SNOMED code is a crucial step towards the implementation of population screening programmes for early detection of type 1 diabetes. Early detection leads to short and long-term health benefits, improved quality of life and cost savings for healthcare providers.

The new code will unlock better monitoring, follow-up and education for people in the earliest stages of type 1. It will also help facilitate recruitment into clinical trials of emerging treatments, enabling people developing type 1 diabetes to access therapies that have the potential to claw back valuable time free from the burdens of type 1 diabetes management.”

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