info@efcni.org

Series of RECAP cohorts – part 2: presenting the cohorts of the EPICure Studies in the United Kingdom and Ireland

In our new series about cohorts of the EU-funded project „Research on European Children and Adults born Preterm“ (RECAP preterm), we recently reported about the ESTONIA I & II cohorts. We are happy to present you a second example, the cohorts of the EPICure studies in the United Kingdom and Ireland. Find out more in this article by the current team of lead researchers, Professor Neil Marlow, Professor Elizabeth Draper, and Dr Samantha Johnson.

“EPICure” is a series of studies of the survival, health and development of babies who were born extremely preterm – from 22 to 26 weeks of gestation – throughout the United Kingdom and Ireland. The studies aim to understand what happens to extremely preterm babies as they grow up and how neonatal care can be best organised and delivered to give these children the best chance of survival and long term development.

The studies started in 1995 when a team of researchers identified every single baby born before 26 weeks of gestation in all 276 maternity units in the whole of the UK and Ireland. They collected information about how many babies were born and how many survived to find out how neonatal care impacts on babies’ outcomes by discharge from hospital. Since then, they have tracked the development of the surviving babies throughout childhood and adolescence, offering them assessments at 2, 6, 11 and 19 years of age, to find out how extremely preterm birth impacts on outcomes later in life.

Neonatal care is a fast developing area of medicine and the way in which doctors and nurses look after extremely preterm babies has changed considerably since 1995. Ten years after the first study, the EPICure team wanted to find out whether the improvements in neonatal care had resulted in improved survival and development for extremely preterm babies. So in 2006, the second EPICure Study – EPICure 2 – commenced. This time the research team identified every single baby born before 27 weeks of gestation in the whole of England and collected information about their outcomes to discharge from hospital and assessed their development at 3 years of age. The results showed that survival rates had increased and developmental outcomes at this early age were slightly better – although there was a similar small proportion of babies with severe disabilities, more children in 2006 had no developmental problems at all compared with those born in 1995. The team are now assessing the surviving children at 11 years of age to find out whether these improvements in early development have translated to better outcomes at school age.

The EPICure research team comprises experts from many different areas of science, including neonatology, paediatrics, psychology, psychiatry, nursing, and cardiovascular and respiratory medicine. The team also acknowledge the help of all the healthcare professionals who were involved in neonatal care throughout the UK and Ireland who helped identify the cohorts and look after the babies at birth.

For more information about the EPICure Studies see www.epicure.ac.uk.

Principal investigators: Prof Kate Costeloe, Dr. Alan Gibson, Prof Neil Marlow

Co-investigators for 10-11 year assessment: Prof Neil Marlow, Prof Kate Costeloe, Prof. Janet Stocks, Prof. Elizabeth Draper, Enid Hennessy

Study managers: Dr Samantha Johnson & Dr Joe Fawke