Childhood type 1 diabetes screening feasible in the UK

medwireNews: Two-year findings from the Early Surveillance for Autoimmune Diabetes (ELSA) study demonstrate that type 1 diabetes screening is feasible in the UK.

“The findings have substantial implications for the development of national screening programmes for type 1 diabetes,” say Parth Narendran (University of Birmingham, UK) and co-investigators in a correspondence to The Lancet Diabetes & Endocrinology.

The researchers invited UK children aged 3–13 years to participate in a screening program through social media, the study website, schools, hospitals, and general practices.

The 24,875 children (51.6% boys; median age 8 years; 81% White, 7% mixed ethnicity, 7% Asian, 2% Black) recruited to the study were asked to give a capillary dried blood spot (DBS) sample to test for islet autoantibodies against glutamic acid decarboxylase, protein tyrosine phosphatase IA-2, and zinc transporter 8. The DBS was either self-collected at home, or by a healthcare professional in a clinic or community setting.

Children with a positive DBS were referred for venous blood testing, and those confirmed as having two or more autoantibodies were informed of their diagnosis of type 1 diabetes and invited for a glucose tolerance test to stage their disease.

The majority (61.9%) of children agreed to home testing, while 21.6%, 5.3%, 10.1%, and 1.1% agreed to be tested at school, at their general practice, at another community clinic, or a hospital, respectively.

A higher proportion of children tested at schools, general practices, and other community-based settings did not have a family history of type 1 diabetes and were from minority ethnic groups than children tested at home, the researchers observe.

Overall, 17,283 (69.5%) of the registered DBS cards were returned with sufficient samples for analysis, which the ELSA investigators say “compares favourably” to previously reported return rates for home screening tests in the UK for bowel cancer and sexually transmitted disease.

The return rate was 61.2% for the home test kits and 83.0% for those from alternative test sites, they add. Blood spot testing was associated with 87 adverse events, most commonly presyncopal episodes (n=61) and fainting (n=23).

Three hundred and eight children had a positive DBS test and 90.3% of these participants went onto confirmatory testing and staging, with 84.3% of 235 invited parents and guardians completing an education session.

Parents and guardians of children with a confirmed diagnosis were also asked to complete the six-item State Anxiety Inventory (SAI) before and after the education session.

The median parental SAI score before the educational session was 40.5, and 51.7% of 87 parents scored above the clinical threshold for anxiety of 40.0. There was a nonsignificant decrease to a median score of 37.7 after education, when 48.7% of 184 parents scored above the clinical threshold.

Although all families with elevated anxiety were offered a psychological referral, only two parents and two families accepted support, and the team says that the “psychosocial impact was felt to be manageable.”

The researchers highlight that families who had relatives with a first-degree or any relative with type 1 diabetes were more engaged in the screening program than those without, and were also more likely to have a child with a positive DBS test (2.2–3.7 vs 0.3%). Any population screening program might therefore “be most effectively initiated with relatives of people with type 1 diabetes,” the team suggests.

Narendran et al emphasize, however, that the ELSA study findings for children with a positive DBS also show that “a single education session is insufficient and that families need ongoing access to high-quality information, support, and follow-up.”

They therefore conclude: “As part of next steps, it will be important to explore screening, health economics, and implementation in a pilot study more aligned to clinical care and where research consent is not required.

“It will also be important to explore how the follow-up of children who screen positive for type 1 diabetes can be incorporated into routine clinical care.”

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Lancet Diabetes Endocrinol 2026; doi:10.1016/S2213-8587(25)00363-8