Work

Advancing continuous glucose monitoring for children and young people with hyperinsulinism – a white paper from the Congenital Hyperinsulinism International Collaborative Research Network

Year: 2026

Type: article

Abstract: Background Hypoglycaemic brain injury is a persistent threat in the lives of children and young people (CYP) with hyperinsulinism (HI). Up to 50% of affected children develop neurodisability due to severe, recurrent hypoglycaemia that is often clinically silent, with lifelong consequences for individuals, their families and health and social care services. Timely detection and intervention are therefore critical, yet current monitoring approaches cannot anticipate or warn caregivers of imminent hypoglycaemia. Main body Traditional finger-prick self-monitoring of blood glucose is painful, burdensome and ill-suited to the rapid and unpredictable blood glucose fluctuations seen in HI, particularly around mealtimes, during physical activity and sleep. In contrast, continuous glucose monitoring (CGM) provides near-continuous glucose data, real-time trends and predictive hypoglycaemia alerts. While CGM has transformed diabetes care, reducing hypoglycaemia and improving quality of life, CYP with HI remain largely excluded from these advances in technology. This disparity reflects a critical gap in rare disease care caused by licensing restrictions and an absence of clinical guidance. This white paper is a consensus-driven call to action. We urge policymakers, funders and device manufacturers to recognise the urgent need for equitable CGM access in HI and to: • Strengthen policy and clinical guidelines to recognise CGM as a tool to improve care for CYP with HI, with the aim of safeguarding neurodevelopment, wellbeing and future productivity. • Secure sustainable funding and equitable access to CGM devices for CYP with HI, where the potential for cost savings through reduced emergency admissions and lifelong disability support may off-set costs. • Accelerate device innovation and regulatory approval for CYP with HI so that CGM can be used from the neonatal period. Conclusion Addressing these needs will enable safer, more patient-centred care and enhance quality of life for CYP with HI and their families. Clinical trial number Not applicable.

Source: Orphanet Journal of Rare Diseases

DOI: 10.1186/s13023-026-04568-z