New international medical code launches for presymptomatic type 1 diabetes
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.
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 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.
Dr Lauren Quinn at the University of Birmingham, who co-leads the ELSA study and helped develop the new code, said: “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 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.”
Hilary Nathan, Director of Policy and Communications at JDRF UK, the leading type 1 diabetes charity, 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.”
The SNOMED code for type 1 diabetes is ‘Diabetes mellitus type 1 - 46635009’. The new code for presymptomatic type 1 is ‘Presymptomatic diabetes mellitus type 1 - 1290118005' and is now available to add to people’s electronic health records. These codes are also included in the 'Health conditions' section of the NHS app, so people developing type 1 diabetes and their families can use it too.