Rare pregnancy diseases studied

Specialists are to study rare but potentially fatal disorders which can affect pregnant women. The UK Obstetric Surveillance System, the first of its kind, will collect reports of rare disorders including eclampsia and TB in pregnancy.

Some conditions are so rare that few midwives and obstetricians will come across them in their whole careers. It is hoped the surveillance system will enable experts to develop guidance on how best to treat such conditions.The experts behind the scheme, from the Royal College of Obstetricians and Gynaecologists and the National Perinatal Epidemiology Unit, say they hope it will also improve the information which can be given to women affected by such condition. In its first phase of research, Ukoss will focus on conditions including eclampsia, a fitting condition which can follow on from pre-eclampsia. It will also try to establish the number of women who undergo hysterectomies after childbirth. Researchers will also look at cases of TB in pregnancy – which often does not show up in the lungs so can go undetected – and how it affects the developing baby. Response All hospitals with a consultant-led obstetric unit in the UK will be asked to complete a report card each month, and will be asked to report any cases of these conditions. If they say there has been a case, Ukoss will ask for more details, though patients remain anonymous, so that they can analyse what happened in that particular case. Most surveys will be conducted for one year. In the future, Ukoss will carry out studies into areas identified by midwives and obstetricians as priority areas for research. The experts behind the system hope it will enable the health service to respond to women’s health needs more effectively. Dr Marian Knight, Ukoss clinical co-ordinator, told the BBC News website: “There are a number of disorders that are rarely related to maternal death. But clinicians don’t know how many women survive them. “We are hoping to prevent maternal deaths. And there are questions about the best way to manage these conditions.” Professor Jim Dornan, Vice-President of the Royal College of Obstetricians and Gynaecologists, said: “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, added: “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.”(Source: BBC Health, Royal College of Obstetricians and Gynaecologists, February 2005)