BPSU surveillance of severe microcephaly commences

October is the first month of a new surveillance study of severe microcephaly led by Dr Rachel Knowles from the UCL Great Ormond Street Institute of Child Health. The study will collect information on all babies aged under 12 months who have a head size that is more than 3 standard deviations below the mean, or below the 0.4th centile on the standard UK growth chart.

In this new study, we want to find out more about the clinical presentation, management and outcomes of babies with microcephaly due to any cause, including congenital infections, environmental exposures, genetic or unknown causes.

Some babies who meet the case definition for severe microcephaly may also be eligible to be reported to the BPSU congenital Zika syndrome study so we will be working with the Zika study investigators to share information and make sure both studies have complete datasets. 

Microcephaly is important because it may be associated with abnormal brain structure and neurodisability, although some babies will develop normally. Although microcephaly may be reported to congenital anomaly registers, there appears to be significant under-reporting.

So this study will help us to get a more accurate picture of how many babies are affected in the UK and Ireland each year, as well as how often microcephaly is associated with neurodevelopmental problems, including hearing and vision problems. 

This study will inform improvements in services to meet the needs of children with microcephaly and their families and, importantly, we will be working with the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) to explore better ways to monitor sudden changes in the frequency of microcephaly.

The study is funded by Great Ormond Street Hospital Children’s Charity and is supported by two charities: Sense – a charity providing services to children and adults with sensory disability – and Contact – a charity that supports families of children with disabilities.

If you have any questions about the study, or wish to ask about the eligibility of a particular patient for inclusion in the study, please contact Dr Rachel Knowles (rachel.knowles6@nhs.net).

More about the BPSU study on severe microcephaly