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EUROPE'S FIRST DEDICATED BIRTH DEFECTS RESEARCH CENTRE

As the number of babies born in the UK with a serious birth defect continues to cause concern, leading children’s disability charity Newlife Foundation announces its establishment of Europe’s first dedicated birth defects research centre.

The Newlife Foundation for Disabled Children Birth Defects Research Centre

– at the Institute of Child Health/Great Ormond Street Hospital in London – will target the understanding, prevention, management and treatment of in-born conditions of all kinds.

Newlife has invested £1.5million in the research centre, which is officially opened today by HRH Princess Anne.

Newlife Medical Director Professor Michael Patton said: “Birth defects are a major cause of disability in childhood and sometimes terminal illness. They may also cause miscarriage and fetal loss. Official statistics published this summer reveal that around 42 children are born with a significant birth defect each day in the UK – that’s one in every 45 live births – and up to one in every 202 pregnancies.

 “The work of our Newlife Birth Defects Research Centre will have a significant impact on our understanding of birth defects and will have cutting edge research using the latest technology in genetics and developmental biology.  This will continue to improve the ability to diagnose and ultimately prevent or treat many of these birth defects.”

He added: “The Institute of Child Health works together with Great Ormond Street Hospital to transfer research into best clinical practice. The Newlife Birth Defects Research Centre will also give medical students in London an opportunity to study and carry out research as part of their training. When they go on to become doctors many will continue to advance research into childhood disorders which will be good for the health of our country as a whole.”

The charity is currently funding seven research projects at the Institute of Child Health, GOSH and University College London and will continue to fund further research at the new centre.

Professor Patton added: “Unfortunately we do not know the real impact of birth defects across the country as only 40 per cent is collecting the detailed data on the frequency and pattern of these disorders through specialised congenital birth defects registers.”

An Office of National Statistics register was set up post-Thalidomide in the Sixties to measure the incidence of birth defects across the UK. This was voluntary, relying on doctors and midwives to report their findings, and as a consequence only a few regional registers were subsequently developed but these have proved to be extremely useful in providing detailed statistics. Since the ONS abandoned its national database it has left the UK with a scattering of locally funded registers, some of which do not have secured budgets after spring 2013. So lack of monitoring could worsen still further.

He said: “There are whole swathes of the country which are not adequately monitored. Without full coverage it is possible that another crisis like Thalidomide could occur again. This makes the work of the new birth defects research centre even more crucial.”

 

Pictured : 1) Prof Michael Patton - Genetics Research               

               2) A Small Part of the New Newlife Research Centre at GOSH             

 

External Refrence: http://www.bbc.co.uk/news/uk-england-london-20078092

 

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Additional information

Summer 2012 saw the British Isles Network of Congenital Anomaly Registers (BINOCAR) release its latest birth defects figures.

The BINOCAR data is based on the recording of birth anomalies in six areas of the UK – North of England, South West, East Midlands and South Yorkshire, Wales, Wessex and the combined counties of Oxfordshire, Berkshire and Buckinghamshire. Newlife has been a long-time supporter of these registers, urging government to encourage their expansion throughout the UK as they are the only monitor of such public health knowledge and play a vital role in developing services to meet future need.

Monitoring of birth defects started in the 1960s, post-Thalidomide, and provides key data on the conditions that are the biggest threat to child health and pregnancies. Comparing the information to European registers shows the prevalence of birth defects in the UK is similar to other parts of Europe, although congenital heart disorders and urinary problems are noticeably lower in the UK.

Professor Patton said: “There is an international recognition of the importance of monitoring birth defects, but the UK seems to be falling behind. Most European countries have national registers, as well as North America, South American countries like Brazil and certain parts of Africa.”

The UK data also backs up previous findings that maternal age is related to these conditions. Mothers in the 25-29 age group have the lowest prevalence of all anomalies. It also shows that the prevalence is higher in the under-20s and significantly higher in women over 40. 

To view the BINOCAR report in full, go to: http://www.binocar.org

In response to these latest BINOCAR findings and prompted by the opening of the Newlife Birth Defects Research Centre, the charity has launched its ' Save Our Babies' appeal.

Newlife Head of Operations Stephen Morgan said: “Higher levels of investment are key to combating the conditions which lead to lost pregnancies and loss of ability and health in our babies”.

Save Our Babies will focus its attention on funding UK-based research to improve understanding, diagnosis and treatment of birth defects and work towards prevention. Newlife is appealing to individual donors to fund an hour of research at £29, or a day for just £238.

To find our more about the Save Our Babies appeal, visit http://www.saveourbabies.co.uk or call freephone 0800 988 4640.



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