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New research group to study pregnancy disorders

A new surveillance system of pregnancy specialists is to study rare but potentially fatal disorders which can affect pregnant women.

The UK Obstetric Surveillance System, (Ukoss) the first of its kind, will collect reports of rare pregnancy disorders some of which are so rare that few midwives and obstetricians will come across them in their whole careers.

The experts behind the scheme, from the Royal College of Obstetricians and Gynaecologists and the National Perinatal Epidemiology Unit, say they hope it will improve the information which can be given to women affected by such rare conditions and develop guidance on how best to treat them.

Ukoss will initially focus on conditions such as eclampsia, a rare but potentially fatal pregnancy disorder which follows on from pre-eclampsia. They will also look at TB in pregnancy and how it affects the unborn baby as well as trying to determine the number of hysterectomies performed after childbirth.

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 will remain anonymous, so that they can analyse what happened in that particular case.

It is thought that Ukoss will follow study areas suggested by midwives and obstetricians to be priorities for research.

Dr Marian Knight, Ukoss clinical co-ordinator, told BBC News, "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."

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