Spina bifida - parents need up-to-date information
This research was completed on 30 May 2006
|Project Leader||Dr J J Kurinczuk MSc, MD, FFPH, FAFPHM, Dr P Boyd MD, Dr M Y Anthony MD, FRCPCH, Dr P F Chamberlain MA, MD, FRCS(C), FACOG and Dr M Redshaw BA, PhD, CPsychol|
|Location||National Perinatal Epidemiology Unit, University of Oxford in conjunction with the Neonatal Unit and the Nuffield Department of Obstetrics and Gynaecology, John Radcliffe Hospital, Oxford|
|Grant awarded||29 October 2004|
|Start date||31 May 2005|
|End date||30 May 2006|
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Spina bifida is a condition that can occur during fetal development and is due to a failure of the bony part of the spine to close over the spinal column, leaving the nerve tissue exposed. Although introduction of folic acid supplements has been successful in reducing the incidence of spina bifida, it still currently affects around 1 in 1,000 pregnancies. Children born with this condition often require surgery and have a high risk of severe, life long disabilities such as paralysis, fluid on the brain, limb and spine deformities, bladder, bowel and sexual dysfunction, psychosocial and learning disabilities. Over the last 30 years much has been learned about the causes, prevention and diagnosis of spina bifida during pregnancy. Despite this, doctors have relatively little up-to-date information to give to parents faced with the diagnosis. Most of the information we have comes from an era before it was possible to diagnose the abnormality during pregnancy and when different treatments were used. This feasibility study is aimed at following up children born with spina bifida in the 1990s to find out how they have fared. This information could then be used to help conduct a larger study with the ultimate aim of collecting up-to-date information that can help parents faced with making difficult decisions following this diagnosis during pregnancy or at delivery.