From rxpgnews.com
UKOSS - World first for study of rare disorders of pregnancy and childbirth
By Royal College of Obstetricians and Gynaecologists,
Mar 3, 2005 - 5:32:38 PM
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.
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