CHILD Study: Congenital HyperInsuLinism a Developmental Surveillance
Research type
Research Study
Full title
Can any themes in developmental progress in children with Congenital Hyperinsulinism (CHI) be identified and does a specialist, early developmental assessment benefit children’s access to appropriate services in this rare disease?
IRAS ID
349246
Contact name
Carey Eldred
Contact email
Sponsor organisation
Division of Research and Innovation
Duration of Study in the UK
1 years, 11 months, 31 days
Research summary
Neurodevelopmental delays or conditions are often described as being associated with Congenital Hyperinsulinism (CHI). Reports are varied in terms of incidence but are described as occurring in up to 48% of children with CHI. Parents report that outside of specialist services there is a poor understanding of how a rare disease such as CHI can impact neurodevelopment. As such, they struggle to get appropriate testing and support for their child.
Developmental delay may refer to speech (receptive and expressive), motor (gross and fine motor), cognitive, personal and social difficulties. Children who are neurodiverse, such as those with autism, have a complex and variable presentation of developmental challenges. The Bayley Scale of Infant and Toddler Development is a global development assessment used to assess children aged 1 to 42 months. Efficacy is well supported in the literature and it is considered a gold standard early developmental tool. Each domain of development is assessed, and scores can be compared to age matched normative data to describe delay which would enable comparisons to typical populations for this research. This study will use the Bayley Scale to developmentally assess all children with CHI aged 2-3.5 years, under the care of GOSH who wish to participate. A detailed report will then be produced for parents to be able to access local services more easily and expertly, to enhance families ability to support their child.
We do not currently have data as to whether early delays can be identified in this group to enable further study into common delays and how they link to longer term/ persistent delays. Similarly, the importance of using early assessment to access appropriate care has not been described. This study would be a novel piece of research.
REC name
North West - Liverpool Central Research Ethics Committee
REC reference
25/NW/0120
Date of REC Opinion
15 Apr 2025
REC opinion
Favourable Opinion