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Researchers call for national funding to monitor all birth defects

BMJ 2012; 345 doi: https://doi.org/10.1136/bmj.e5274 (Published 02 August 2012) Cite this as: BMJ 2012;345:e5274
  1. Sophie Wedgwood
  1. 1London

Most congenital anomalies in England and Wales go unreported with the risk that clusters of defects could go undetected and not be investigated, says researchers.

The second annual report of congenital anomalies in England and Wales found that one in every 45 babies (2.2%, an estimated 16 000 babies) born in 2010 had a birth defect. This level of congenital anomalies has remained stable for the past five years and is similar to the rest of Europe.1

The report found that the most common anomalies were congenital heart defects, which affected at least five in 1000 births.

Neural tube defects, such as spina bifida, affected one in 1000 babies, as did gastroschisis. Regional monitoring has shown that gastroschisis has become more common in some areas, including Wales, and that babies born to younger mothers were at greater risk. Gastroschisis is also more common in England and Wales than in other European registers.

The audit also showed that mothers between 25 and 29 years had the lowest prevalence for all anomalies (192 per 10 000 total births, 95% confidence interval: 182, 202). The prevalence was higher in the under 20 age group (245 per 10 000 total births, 95% CI: 222, 270) and considerably higher in the 40 and over age group (393 per 10 000 total births, 95% CI: 353, 436).

Researchers from the British Isles Network of Congenital Anomaly Registers, however, warn that because only six regional audits contribute to the registers 65% of births in England and Wales are not included in the audit and some clusters of defects could be missed. They have called for national funding to cover all births.

Joan Morris, from the Wolfson Institute of Preventive Medicine, part of Queen Mary, University of London and editor of the report, 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. Currently there are no registers in London, the south east, the north west, and East Anglia.”

A national reporting system for congenital anomalies was set up for England and Wales in 1964 after thalidomide was found to have caused birth defects. This was voluntary however and there have always been gaps in coverage.

In the 1980s, regional registers were established in some parts of the country to actively collect data from hospital, laboratories and health records. But these have remained patchy and the national registry and some regional services closed down because of a lack of strategic funding and political will.

In 2009 the British Isles Network of Congenital Anomaly Registers was set up to collect data from the six regional congenital anomaly registers. The network is funded by the Healthcare Quality Improvement Partnership, a consortium of the Academy of Medical Royal Colleges, the Royal College of Nursing and National Voices that aims promote quality improvement, and in particular to increase the impact of clinical audit in England and Wales. However, each local register is independent and currently has to secure its own funding.

Morris told the BMJ that Public Health England has said it is committed to extending coverage but so far is only funding the network one year at a time and there has been no additional funding.

“If Public Health England takes formal responsibility for national surveillance of congenital anomalies and provides stable funding for all the registers then there is expertise to set up regional registers in areas that are not currently covered,” she said.

A Department of Health spokesperson said: “Better monitoring is one of the issues that will be looked at by Public Health England and in the autumn we will set out our plans for a renewed focus on children’s health.”

Notes

Cite this as: BMJ 2012;345:e5274

References

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