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Type 1 diabetes registry for children and adults set to launch

The UK’s first type 1 diabetes registry for children and adults at risk of the condition is to be launched by the University of Oxford after receiving a grant from the charity Diabetes UK.

The grant of £610,480 will support the creation of a database and website to form the foundation of the registry. Individuals who test positive for diabetes autoantibodies in clinical care will be added to the registry, along with those identified in screening studies.

The team will also work with clinical and research sites, and approach people who would be interested in joining.

The aims of the registry include providing guidance for doctors on how best to care for and support people who are at risk of type 1 diabetes (T1D) and identify whether being at risk causes people to attend their GP or A&E more regularly. This will allow healthcare teams to catch the onset of T1D as early as possible.

The registry will also collect data on how T1D develops and aid understanding of why people progress from being antibody positive and at risk of T1D to needing insulin.

Dr Rachel Besser, a paediatric diabetes consultant at Oxford University Hospitals NHS Foundation Trust and researcher at the University of Oxford’s Centre for Human Genetics, who is leading the project, said: ‘This registry is a first for the UK and brings together children and adults who are at risk of T1D.

‘It is an important step towards a better understanding of the care and support people at high risk of type 1 require, allowing us to offer them a “softer landing” into life with the condition.’

Indeed, the registry can also be used to inform people about treatments and research into T1D prevention, particularly immunotherapy that they could get involved in to help prevent or delay T1D onset.

People on the registry will also be easier to reach with resources to support people after diagnosis, and support people with the mental health burden of living with T1D.

Dr Loredana Marcovecchio, academic consultant in paediatric endocrinology and diabetes at the University of Cambridge and co-lead for the project, added: ‘We’re hoping that it will be easier to tell people about opportunities to take part in research to develop new treatments that might prevent or delay the onset of T1D.’

The Diabetes Trials Unit at Oxford University will host the registry, and Cambridge University will co-lead with the support of researchers from Birmingham, Bristol, Cardiff, Dundee, Edinburgh, Exeter, Imperial College and the British Heart Foundation.

Recruitment to the type 1 diabetes registry is expected to start later in 2024.

Around 400,000 people live with T1D in the UK, including over 29,000 children and young people, and it is becoming more prevalent.

In fact, the incidence of type 1 diabetes in children and adolescents significantly increased during the Covid-19 pandemic compared to pre-pandemic levels, according to a meta-analysis published in 2023. Causal mechanisms for this change are still unclear.

Previous research also suggested that the risk of T1D was significantly elevated in children and adolescents more than 30 days after an infection with Covid-19.

Risk registries are increasingly being developed to reveal more about how genetic variation affects diagnoses of conditions such as Lynch syndrome, which exposes people to greater risk of bowel and other cancers.