Lack of nationwide surveillance may lead to clusters of congenital anomalies going unnoticed

One baby in every 45 was born with a congenital anomaly in 2010 according to the second annual report by the British Isles Network of Congenital Anomaly Registers (BINOCAR), released today (Thursday).

The report [1] by researchers at Queen Mary, University of London collates data from six regional registers [2], one more than for 2009, taking the national coverage to 35 per cent of the births in England and Wales and leaving the vast majority of congenital anomalies unreported. Examples of congenital anomalies include heart and lung defects, Down syndrome, neural tube defects such as spina bifida, and limb malformations such as club foot.

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. However, the editor of the report, 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. Currently there are no registers in London, the South East, the North West and East Anglia.

With formal responsibility for national surveillance of congenital anomalies likely to be met under the single national authority of 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 is Chair of 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. In the intervening years, 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. The creation of a stable system of funding for an entire surveillance network would make it possible to fulfil the potential that the existing registers offer for public health, service planning, clinical audit, outcomes monitoring, research and other purposes.

The main findings from today's report are: