HI BPSU Study V1
Research type
Research Study
Full title
The Incidence, Diagnosis and Management of Hyperinsulinism (HI) in the United Kingdom and Ireland, A British Paediatric Surveillance Unit Study
IRAS ID
342671
Contact name
Kathryn Beardsall
Contact email
Sponsor organisation
University of Cambridge and Cambridge University Hospitals NHS Foundation Trust
Clinicaltrials.gov Identifier
2023-1413, Addenbrooke's Charitable Trust; HVS/2025/4534, Insurance, University of Cambridge
Duration of Study in the UK
2 years, 1 months, 1 days
Research summary
Hyperinsulinism (HI) is a rare condition where the pancreas releases too much insulin, causing severely low blood glucose (hypoglycaemia). Babies usually show symptoms early in life as HI can be caused by stress around the time of birth, maternal health problems, and genetic changes, but it may also present later in childhood. Identifying HI early is a challenge for doctors as healthy newborns often have brief low blood glucose episodes too. If not diagnosed and treated promptly, low blood glucose damages the brain, leading to disability, seizures and even death.
Most children with HI spend a long time in hospital and some need treatment at specialised hospitals far from home. It is difficult to know at the time of diagnosis whether a child’s HI will quickly get better, can be well controlled with medication, or will require specialised treatment. Uncertainty about the care their child will need, both in the short and long term is extremely difficult for families.
Our goal is to record how many children are diagnosed with HI by asking all doctors in the UK and Ireland to report cases for 13 months, we will follow-up cases at 1 year post diagnosis. This will help us understand more about how HI presents, how it is diagnosed and managed, and explore differences in care across the regions.
Understanding the care provided by regional hospitals, where initial diagnosis and management happen, is crucial. By exploring how infants and children with HI present and are cared for, future studies looking at prevention and new treatment options can be better designed. This research will help guide where education and resources can be focussed to best support families and the healthcare system.
REC name
Wales REC 7
REC reference
26/WA/0087
Date of REC Opinion
27 Mar 2026
REC opinion
Favourable Opinion