December 2017

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Newsletter December 2017

 As we approach the end of 2017, the EPICure team are continuing to work hard on the EPICure2@11 study that involves children born extremely prematurely in 2006 in England So far we have heard from over 150 parents whose children have agreed to take part in the study and the parents of over 30 children who were born at term who have volunteered to join our comparison group. Although it means a day away from school work, we hope that the information we collect will help confirm to schools how well the EPICure children and the volunteer term-born children are doing now they are 11-12 years of age.

 Way back in 2009-10 when we last saw the children at three years of age, we showed that the development of extremely premature babies was improving. There were fewer problems and much higher developmental scores among extremely premature children born in 2006 compared with extremely premature children born in 1995. Now we want to find out whether we still see this improvement in the children’s outcomes as they approach secondary school. If your child has received an invitation to take part, please return your study forms as soon as possible because it takes a lot of time to coordinate assessments all over the country.

 EPICure in the news – we continue to work with other groups to understand the challenges faced by children and adults born extremely prematurely and your data are very valuable us and to other researchers who are able to use the EPICure data in a range of other studies.

 Recently data collected from all neonatal intensive care units in England showed that survival for very preterm babies has increased over the last 10 years. This study used the EPICure data to show that in England survival has increased by 4% per year for babies born at 23 weeks gestation, and 2% per year for babies born at 25 weeks gestation – overall this represents a massive change and reflects the success of our neonatal teams working across the country.

 Another of our reports showed the importance of being born in an expert neonatal centre. This study has changed national policy and now 3 in 4 women giving birth below 27 weeks gestation will do so in a centre with an expert neonatal intensive care unit (NICU) in England.  Although this is a large improvement as only half of women delivered babies before 27 weeks of gestation in NICU centres in 2006, in many areas now this is over 80% and we are working with NHS England to ensure that all births occur in the right place where possible.

 The EPICure team have also worked with Bliss and others to show the importance of having a single nurse looking after a baby receiving intensive care – the first time this has been shown to be important for improving preterm babies’ outcomes.  These and other aspects of our work are helping to shape national policy, which is under review at the moment – so a big thanks to all who have contributed and continue to do so.

 We now have international collaborations across the world, including Europe, Australia, the USA and Canada to compare outcomes and learn more from the information you have helped us collect.

 EPICure@19

Having completed this study last year the publications are just coming out and will do with greater frequency over the next 6 months. This is an important study that has shown us what happens to extremely premature babies as they reach adulthood and it has told us a lot about the value of our assessments in childhood – that they reflect adult outcomes very closely.  It has also helped reassure us about ongoing breathing problems and pointed us to look hard at the development of blood vessels in childhood.  We are disappointed that it has taken us so long to get all the data together but we are getting there now!

 We remain so grateful for the support of the parents and participants in helping us design and deliver these complex studies. EPICure continues to be one of the most important studies of prematurity throughout the world. Without your support this work is impossible and the worldwide influence of EPICure is because of your commitment.  Thank you again! 

Wishing you all the best for the approaching festive season and for 2018!