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Vast majority of birth defects not being picked up

Patchy monitoring means regional increases would not be investigated

Caroline White

Thursday, 02 August 2012

One baby in every 45 was born with a congenital abnormality in 2010, shows the second annual report by the British Isles Network of Congenital Anomaly Registers (BINOCAR), published today.

The report, which collates data from six regional registers, covers around a third of all births births in England and Wales, but it means that the vast majority of congenital abnormalities, such as club foot, neural tube defects, and heart defects are going unreported.

There are no registers in London, the South East, the North West or East Anglia.

Commissioned by the Healthcare Quality Improvement Partnership (HQIP), the study is the most up-to-date and comprehensive of its kind, bringing together existing data in England and Wales from 2006 to 2010.

It shows that 2.2% of babies had a congenital abnormality in England and Wales in 2010. Prevalence was similar to that seen in other European registers.

The most common abnormalities were congenital heart defects, which affected at least five in every 1000 births. Some cases required major surgery and around 7 per cent of babies born with a heart defect died before the age of 1.

Neural tube defects, such as spina bifida, affected one in 1000 babies, as did gastroschisis –where the intestines develop outside the abdomen. Regional monitoring has shown that this condition has become more common in some areas including Wales, and that babies born to younger mothers were at greater risk.

Over half of all major congenital abnormalities were detected during pregnancy. The lowest prevalence of birth defects was seen among babies born to mums between 25 and 29. Rates were higher among those whose mums were under-20 or over 40.

Report editor, Professor Joan Morris, from the Wolfson Institute of Preventive Medicine, part of Queen Mary, University of London, said: “We remain concerned that data for substantial parts of the country, including London, are not currently monitored, meaning large regional increases in congenital anomalies could go unnoticed and their causes not investigated.”

With formal responsibility for national surveillance of congenital anomalies likely to be met by Public Health England (PHE), there is an opportunity to expand the current system to provide national coverage.

Professor Elizabeth Draper from the University of Leicester, who chairs BINOCAR, commented: “This important report again highlights the value of the existing regional registers. We are grateful for the ongoing support from HQIP to help maintain existing surveillance arrangements, and we will continue to work closely with them and PHE to implement full national coverage in the near future.”

The number and types of congenital anomalies have been monitored since the thalidomide epidemic in the 1960s. Since the 1980s, regional registers have been established in some parts of the country to actively collect data from hospital, laboratories, and health records.

But since then, lack of strategic funding coupled with a lack of support at national level has led to the closure of the national system and some of the regional registers.

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