The UK Obstetric Surveillance System (UKOSS), the first system of its kind worldwide, to study rare disorders of pregnancy, will be launched today, 11th February 2005.
Rare disorders of pregnancy are such that most practising midwives and obstetricians will see fewer than one case in a year. Some are so infrequent that health professionals may see only one case in a working lifetime, making it difficult to build up sufficient individual expertise to be confident as to the appropriate clinical management.
However, if the number of women who suffer from these conditions are added together, it is clear that rare disorders actually cause a significant burden to women, their families and carers, the health professionals and health systems that care for them.
Studying these disorders also poses problems because we do not have the appropriate information to make decisions about treatment. Nor do we have sufficient information to enable us to plan services appropriately. Neither can we explain with any confidence to a woman with one of these conditions how the disease may affect her and her baby. There is clearly a need therefore, to develop a system that allows the study of the epidemiology and management of these rare conditions without imposing a significant reporting burden on the staff who care for affected women. UKOSS provides such a system.
UKOSS, a joint initiative between the Royal College of Obstetricians and Gynaecologists and the National Perinatal Epidemiology Unit, will identify these rare disorders through a monthly card mailing to nominated obstetricians, midwives and anaesthetists in each hospital in the UK with a consultant obstetric unit. Initial studies will cover acute fatty liver of pregnancy, amniotic fluid embolism, antenatal pulmonary embolism, eclampsia, peripartum hysterectomy, and tuberculosis. Most surveys will be conducted for one year. New studies, identified by midwives and obstetricians as priority areas for research, will replace completed ones. In this way, UKOSS will conduct a rolling programme of studies, and will provide a system capable of responding to emerging conditions of public health importance.
Professor Jim Dornan, Vice-President of the Royal College of Obstetricians and Gynaecologists says, "When problems are detected in pregnancy, it inevitably leads to stress and anxiety for the woman and her family. UKOSS will allow obstetricians to begin to develop a greater insight into rare pregnancy disorders by building 'the bigger picture'. The information UKOSS gathers will then benefit mothers, their babies and clinicians alike."
Dr Peter Brocklehurst, Director of the National Perinatal Epidemiology Unit says, “UKOSS is an important new research initiative which will provide reliable information about rare disorders affecting women in pregnancy. The information gained will help improve the quality and consistency of care for women with these uncommon conditions and their babies.”
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For further information please contact Dr Marian Knight, UKOSS Clinical Coordinator, National Perinatal Epidemiology Unit, University of Oxford, Old Road Campus, Oxford, OX3 7LF. Tel: 01865 227000. Email: UKOSS@perinat.ox.ac.uk or see www.npeu.ox.ac.uk/ukoss.
The National Perinatal Epidemiology Unit (NPEU) is a research unit set up in 1978 by the Department of Health. Although its remit covers England and Wales, the Unit's research and collaborative links are worldwide and its work has influenced national and international policy. The Unit has expanded considerably in recent years and now has well over 40 staff including epidemiologists, obstetricians, midwives, nurses, paediatricians, social scientists, information specialists, economists, statisticians, and computing, administrative and clerical staff. The Unit comes formally within the Oxford University Division of Public Health and Primary Care but has its own administration.
