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First Consensus Guidance Published on Monitoring Early-Stage Type 1 Diabetes


The international statement targets primary care clinicians and endocrinologists with detailed guidance on monitoring disease progression and providing education.

A new international consensus statement offers expert guidance to clinicians in primary care and endocrinology on the care and monitoring of both children and adults who are at high risk for type 1 diabetes (T1D).

In a news release announcing the guidance, Breakthrough T1D (formerly JDRF), the organization that led its development said the completed effort has “the potential to reduce the trauma associated with being diagnosed with T1D, enable people to access the latest treatments to delay the need for insulin therapy, and reduce long-term health complications.”1

The document addresses for the first time the many needs of children and adults who have been screened and tested positive for at least 1 T1D-associate islet autoantibody. They are subsequently classified as:

  • Stage 0 (at risk): single autoantibody or transient single autoantibody
  • Stage 1: 2 or more autoantibodies with normoglycemia
  • Stage 2: 2 or more autoantibodies with dysglycemia but without symptoms and not meeting diagnostic criteria for stage 3, or clinical T1D. 

Historically, before a firm understanding of the gradual, staged onset of the disease, diagnosis of T1D occurred when insulin treatment was already required and too often that took place during a hospital admission for diabetic ketoacidosis (DKA).1 DKA can be life threatening and is estimated to occur in up to 70% of individuals who are not being monitored for disease progression.2 In the UK currently, 1 in 4 children are diagnosed with T1D as an emergency in DKA.1

Regular monitoring after islet autoantibodies have been detected can significantly reduce the incidence of DKA at diagnosis and importantly can provide opportunities for support and for education about the signs and symptoms to be alert for in progressive stages of T1D.1,2 Research has shown also that identification of the autoimmune disease in early-stage or “presymptomatic" T1D, has significant physical and emotional health benefits.1

Screening for islet autoantibodies is not widespread, typically only ordered for individuals with a first-degree relative with T1D or other autoimmune disease and often as part of large longitudinal cohort studies.2 The guidance authors point out, however, that up to 90% of those who develop T1D are not part of at-risk groups and thus are overlooked.2

There is no cure for T1D and so monitoring and retesting offer individuals and in the case of children, their families, time for education and for some preparation for living with the condition. The guidance states that people with stage 2 T1D should be offered participation in clinical trials of investigative therapies or be evaluated for use of the first medication approved by the US FDA, teplizumab (Tzield; Provention Bio) to delay the onset of stage 3, or clinical T1D.2  

There is no cure for T1D and so monitoring and retesting offer individuals and in the case of children, their families, time for education and for some preparation for living with the condition.

The new guidance details the best methods and recommended frequency for retesting to monitor disease progression across pre-symptomatic stages, as well as the point at which insulin should be introduced, according to the news release.1

“This consensus fills a much-needed gap, by providing straight-forward and actionable advice to healthcare professionals about how to monitor and support children, young people and adults with biological markers of type 1 diabetes, who are either at risk of the condition, or who are in its early stages.

"Screening children for type 1 diabetes is not enough to prevent life-threatening illness: once identified they and their family need education, support, and monitoring to identify progression to type 1 diabetes early. We are already using this guidance in our national pre-T1D clinic, and it works,” Dr Rachel Besser, consultant pediatric diabetologist at the University of Oxford, said in the Breakthrough T1D news release. Besser also chaired the working group on monitoring in children and adolescents for the new guidance.1

"Screening children for type 1 diabetes is not enough to prevent life-threatening illness: once identified they and their family need education, support, and monitoring to identify progression to type 1 diabetes early."

"This is not guidance around who to screen or when to screen. This is guidance for the hundreds of thousands of people around the world who have participated in screening, mostly through research programs, and have been identified with positive autoantibodies and need care in the clinical setting,” panel cochair Anastasia Albanese-O’Neill, PhD, APRN, CDCES, said in interview with Medscape.3

There is one previous recommendation that includes monitoring early stage T1D, published by the International Society for Pediatric and Adolescent Diabetes (ISPAD).4 That guidance, most recently updated in 2022, does not cover adults and makes no specific recommendations for psychosocial support or education for individuals who have a positive screening result for autoantibodies. The ISAPD guideline does not provide recommendations for monitoring individuals classified as stage 0 or for the appropriate time to initiate insulin.2

Identified as “broad advice” from the guidance, the abstract summarizes key components as2:

  • Primary care providers and endocrinologists should partner to care for people who are T1D autoantibody–positive.
  • When people screen positive with one or more T1D autoantibody, a second sample should be tested for confirmation.
  • Single autoantibody positivity confers a lower risk for progression than do multiple autoantibodies.
  • People with early-stage T1D should have periodic medical monitoring, including regular glucose testing, regular education about symptoms of diabetes and DKA, and psychosocial support.
  • People with Stage 2 T1D should be offered trial participation or approved therapies.
  • All health professionals involved in monitoring and care of children and adults with T1D "have a responsibility to provide education."

The full guidance is available to download from Diabetologia and Diabetes Care.

1. New guidance sets out how to support people with early-stage type 1 diabetes. News release. Breakthrough T1D (formerly JDRF). June 24, 2024. Accessed July 2, 2024. https://jdrf.org.uk/news/new-guidance-sets-out-how-to-support-people-with-early-stage-type-1-diabetes/
2. Phillip M, Achenbach P, Addala A, et al Consensus guidance for monitoring individuals with islet autoantibody‑positive pre‑stage 3 type 1 diabetes. Diabetologia. Published online June 24, 2024. doi:10.1007/s00125-024-06205-5
3. Tucker M. Experts advise on early-risk monitoring for type 1 diabetes. Medscape Medical News. June 24, 2024. https://www.medscape.com/viewarticle/experts-advise-early-risk-monitoring-type-1-diabetes-2024a1000bpo
4. ISPAD Clinical Practice Consensus Guidelines 2022. International Society for Pediatric and Adolescent Diabetes https://www.ispad.org/page/ISPADGuidelines2022

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