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EPICure: the research shaping the future of babies born too soon

04 April 2016

Looking back on Little Bliss

Little Bliss magazine will celebrate its tenth anniversary in April. To mark a decade of our magazine for parents, we’ll be looking back at some of the most inspiring family stories and popular topics from our previous issues.

Issue 32, Spring/Summer 2014: EPICure - the research shaping the future of babies born too soon

EPICure is the longest running study into prematurity in the world – one that Bliss has supported since it began. This spring, a group of 19 year olds will make their way to London for the next stage of a unique and exciting research project that has followed them through their entire lives. It has the power to transform the lives of millions of others who will follow them into the world too soon.

It is sometimes hard to connect the £1, or even the £100 donated to research, with the difference it can make to individual lives.

Not so with EPICure. This unique research – the longest running study into prematurity in the world – was launched with help and funding from Bliss and has followed the lives of babies born in 1995 between 22 and 26 week gestation.

Researchers have so far met with the families taking part in the research when the group reached two years, six years, 11 years and 16 years. The findings of EPICure have the power to shape health policy, save babies' lives and transform the educational experience of children born prematurely by promoting a better understanding of some of the most unique aspects of their development.

The research group, who are now in their 19th year, are now back to London for the next stage of the study: EPICure@19.

“EPICure has always been a world leader on this subject,” says Professor Neil Marlow, director of the study and a consultant neonatologist at University College London’s Institute for Women’s Health.

“In 1995 we wanted to demonstrate the risk of being born at low gestation, which we knew would have an impact on colleagues who worked in obstetrics and neonatology. But by making it into a longitudinal study we could also feedback to parents and professionals what the outcomes for these babies were likely to be.

"Until EPICure no one had a handle on how many babies were surviving, or what the future was like for them if they did," says Professor Marlow. "We wanted to know how the risks of an early birth translate into the lives of infants as they grow, evolve through puberty, enter early adolescence and become young adults. I know when we did a two-and-a-half year study, outcomes for some looked poor, but at six and 11 the same children had sometimes overcome some difficulties. We are really interested to see what has happened to this generation of children now they are 19.”

Professor Marlow says the research, which is now funded by the Medical Research Council and draws on similar research being done across the world, has helped them identify a whole range of issues. From the impact of where a baby is born and the care he or she receives, to the learning difficulties they may experience later on. “Identifying a child who has problems with maths is one thing, but knowing how that child learns as a result of an early birth, and so how to help them effectively is different,” says Neil.

“Bliss supports families at a time when they need us most,” says Zoe Chivers, Head of Services at Bliss. “Informing them about research is an important part of what we do. Parents need an insight into what the future holds, and what support they can get as their child grows. EPICure has helped us see the potential every baby has.

“By looking at the long term outcomes throughout their childhood and young adulthood, it helps shape the information and support we offer. We are so proud to be part of this study because we can see how it will help all of us who are involved in child health provide the right sort of educational, social, and psychological support as a child grows.”

Sallie Watson, mum to Georgie who is part of Epicure’s study group, said: "I am bursting with pride. Georgie seems to have moved mountains in her 19 years, largely by giving 110 per cent to everything. She was born at 25 weeks and given a very small chance of survival. We can see, looking back, how much we have learned and how much more needs to be understood in health and education. I can remember how Georgie hated school when she started, and how on her first school report the teacher talked about what she ‘couldn’t’ do, but asked me to read that as ‘wouldn’t’, as if my daughter was purposely being difficult. Georgie and I are delighted she is involved in this study, and are excited about the difference the findings might make to other families in the future.”


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