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Launch of new international medical code for presymptomatic type 1 diabetes

Researchers at BHP founder-member the University of Birmingham have partnered with NHS England to produce a diagnostic code tailored for individuals in the early phases of type 1 diabetes, enhancing patient prospects for timely healthcare and access to cutting-edge treatments.

Today marks the introduction for a new SNOMED CT code specifically for presymptomatic type 1 diabetes, which will be integrated into the standardised and multilingual set of clinical healthcare terminology. SNOMED codes are crucial in electronic health records, being used to identify a person’s underlying medical conditions. This system acts as the most precise and extensive list in clinical health terminology globally.

Type 1 diabetes progresses gradually through three stages, with the initial two stages termed presymptomatic type 1 diabetes. Individuals in this phase exhibit biological markers, or autoantibodies, indicating the onset of the immune attack that targets insulin-producing beta cells. Given the absence of symptoms, detection relies heavily on screening initiatives such as the ELSA study, a trial led by Professor Parth Narendran at the University of Birmingham,  screening children for type 1 diabetes. Screening initiatives such as these will allow for early identification.

Lauren Quinn, who co-leads the ELSA study and assisted in the development of the of the SNOMED code, commented: “The introduction of this SNOMED code facilitates clinical care and follow-up for individuals with presymptomatic type 1 diabetes. It also 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.”

Dr. David Shukla, a GP and Clinical Research Fellow involved in code development, highlighted its practical implications: “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.”

Hilary Nathan, Director of Policy and Communications at JDRF UK, added: “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.”

The code for type 1 diabetes in SNOMED is ‘Diabetes mellitus type 1 – 46635009’. The new code presymptomatic type 1 diabetes, known as ‘‘Presymptomatic diabetes mellitus type 1 – 1290118005′, has now been introduced for inclusion in individuals’ electronic health records. 

These codes are now part of the ‘Health conditions’ category in the NHS app, allowing individuals and their families to access them as well. 

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