News archive 2004
Trial to improve antenatal screening for blood disorders06 Oct 2004, PR 63/04
Pregnant women who are at higher risk of giving birth to children with sickle cell disease or thalassaemia, are being offered screening too late to make the choices they want. In a trial, launched today, Professor Theresa Marteau from King’s College London and her nationally-based team hope to identify ways of improving the delivery of care so women are screened earlier in pregnancy.
This study is of particular importance to women in Lambeth, as this borough houses the highest concentration of people with sickle cell disease in the UK.
The King’s study will be carried out in 24 general practices across Lambeth and Newham. It aims to see if it is possible for GPs to offer the tests for both sickle cell disease and thalassaemia when women first report their pregnancy. The researchers also want to find out whether women would accept being offered these tests by their GPs when their pregnancy is first confirmed, and how cost effective it would be to implement these changes to the screening procedure.
It is crucial that screening for these two conditions is offered early in pregnancy – ideally before the woman is ten weeks pregnant. This allows time for more tests to be offered which are needed to find out whether or not the baby is affected. If these conditions are diagnosed in the baby, the parents may want to think about having a termination. Many parents turn down screening if it is offered too late because they are not prepared to consider a termination so late in pregnancy.
Dr Elizabeth Dormandy, one of the researchers involved with the trial, explained how bad the situation currently is in one of the London boroughs: ‘Over the last year, 59 couples in Newham were identified as being at risk of having a child with sickle cell disease or thalassaemia, yet only nine of these couples were offered prenatal screening for the disease before the mother had reached eleven weeks gestation.’
This figure seems low given that screening for the disorders involves only a simple blood test. However, the tests are currently offered to pregnant women by their midwives – and with some women having to wait up to four weeks to see their midwife, this system could be introducing unnecessary delays.
Overall, sickle cell disease affects 1 in 2400 births in England and is most common among people of African and Caribbean descent. The condition can be of variable severity but those affected by the condition often endure a lifetime of pain caused by their sickle-shaped red blood cells frequently blocking small blood vessels.
Thalassaemia is a rarer condition, affecting around 17 infants born each year in England, but living with the disease requires fortnightly to monthly blood transfusions.
Dr Allison Streetly, Programme Director of the NHS Sickle Cell & Thalassaemia Screening Programme said ‘We welcome the start of this trial which we hope will provide pointers to achieving the policy which we have set for the Programme of offering early screening to allow women informed choices.’
The NHS Sickle Cell & Thalassaemia Screening Programme is part of the UK National Screening Committee for all screening programmes. Early offer of screening is a priority for maternity services generally, as recommended by NICE and the recent Department of Health’s Women and Children National Service Framework.
Dr Elizabeth Dormandy explained why this study is so important: ‘This study, funded by the NHS Health Technology Assessment, complements the NHS Sickle Cell and Thalassaemia Screening Programme that was launched in July 2004. Our trial should provide valuable information that will contribute to the success of this Programme by determining whether it is feasible for GPs to offer screening at the earliest possible opportunity to pregnant women and their partners across all ethnic groups in the two London boroughs.’
Notes to editors
Clinical Trial information
The Screening for Haemoglobinopathies in First Trimester (SHIFT) trial is headed by Professor Theresa Marteau, Chair of the Training and Education Subgroup of the NHS Sickle Cell & Thalassaemia Steering Group. The trial is funded by the NHS R&D National Coordinating Centre for Health Technology Assessment.
National NHS Sickle Cell and Thalassaemia Screening Programme
The National Programme Centre at Guy’s, King’s and St. Thomas’ School of Medicine, King’s College London oversees the development of policy, and the implementation and quality management of the National NHS Sickle Cell and Thalassaemia Screening programme.
For further details see www.kcl-phs.org.uk/haemscreening/
King’s College London
King’s is one of the oldest and largest colleges of the University of London with 13,800 undergraduate students and some 5,300 postgraduates in ten schools of study. The College had 24 of its subject-areas awarded the highest rating of 5* and 5 for research quality, demonstrating excellence at an international level. King’s is in the top group of five universities for research earnings with income from grants and contracts of more than £93 million (2002-2003) and has an annual turnover of £320 million. King’s is a member of the Russell Group, a coalition of the UK’s major research-based universities.
For further information about the trial contact:
Dr Elizabeth Dormandy, SHIFT trial co-ordinator
Tel: 020-7188 2596
Alternatively contact Gemma Bradley, Press Officer, King’s College London
Tel: 020-7848 4334
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