December 2012

Season’s Greetings from the EPICure team!

Thank you for your continued interest in EPICure.  The study may have seemed to have gone quiet over the past two years but as many of you are aware it is reawakening again with both the publication of the results of EPICure 2 and our 16-17 year questionnaires! In fact 2012 has been an eventful year for the EPICure team. Firstly we have at last succeeded in getting our two papers detailing the neonatal outcomes and 3-year assessments for the EPICure 2 children (born in 2006) published in the British Medical Journal (BMJ).  These are the first major papers from this huge study and are set for publication on Dec 5th 2012.  We will write to you all before they come out with more details of the findings and conclusions. We were also successful in obtaining a substantial grant from the Medical Research Council to continue the study of children – now young adults – at 19 years from the EPICure1995 study.  This will allow us to answer in detail the crucial question of what happens to the health and wellbeing of children born very prematurely when they reach young adulthood.  No other study has followed a group such as this for so long.  More about this later … We thank also all the parents and children who have contacted us over the last 12 months at the EPICure Office either directly or via the EPICure web site, or even Face Book. Many just wanted to keep us up to date with their new address and some have asked for advice and guidance and/or wanted to share the joys and the very real problems of growing up after extreme premature birth. We hope you will continue to use the EPICure Office as a point of reference for all your queries.

So – in a bit more detail what are we up to?

EPICure 2

The hot off the press papers are available in full from the BMJ website from early December 2012.  The first paper looks at the events that happened around birth and in the neonatal unit through until discharge home and compares what we found to the original study of births in 1995. We show that the outlook is improving in that around 13% more babies now are discharged home and that is despite an increase of over 40% in the number of babies admitted to neonatal units. Sadly the number of complications seems unchanged and so we still have a lot to understand about the causes of neonatal illness. The second paper looks at the 3 year outcomes and is also encouraging as the proportion of children we look after from birth who have no serious problems has risen by over 10%.  However the number of children who still have serious impairments has not decreased.  So overall the messages are mixed and we hope later in the year to start planning a further assessment of these children at school – although it will be probably at 7 or 8 years of age and very different to the assessments carried out as part of the original study. We also have a lot of new studies based on the information you and your hospital supplied us with that will be published over the next 12 months.

EPICure@16

We have had a great response so far from the 1995 children and the comparison group, the latter consisting mostly of previous class mates. A big thank you to all who have responded so far independently of whether you wish to continue to take part in the study.  We have had (almost always positive) responses from just over half of the EPICure 1995 group and half of the controls but we really hope to hear back from more of you soon and we have sent out a second reminder to those we haven’t heard from.  A third reminder is included with this Newsletter only to those from whom we have not heard yet. We would really like to have information on how well you are all doing but if you would like to leave the study this is the time to let us know. Thank you.  

EPICure@19

This will be the next study and will start in January 2014. We would like to invite everyone to spend a day with us in London (all expenses paid, including overnight accommodation!) as some of the research studies need sensitive equipment that is difficult to move about.  However they all will be interesting and fun to take part in. We will write over next summer and start to plan these appointments by the end of the year.

New additions to the EPICure team

We welcome some new members to our research team.  Kate Bennett is a statistician and joins us for the next four years and two other students are working hard analysing data from both studies – Andrei Morgan a neonatologist working at UCH and Louise Linsell a statistician from Oxford.  We also have been successful in obtaining a new research grant to study communication in the hospital around the time of birth to improve parent’s experience and the care we offer in these difficult and stressful moments.  Dr Katie Gallagher will be leading this project which is funded by the National Institute for Health Research.

New EPICure Website stories

One of the important things is for us to tell some of your stories and if you look on the website we are beginning to put together some great stories from inspirational young people who happen to have been born extremely early.  We hope you enjoy reading them and if you would like to contribute we can help you to prepare a short piece. Thanks to Jocelyn, Ellie, Melanie (in progress)and Lauren (in progress) for their contributions.

New collaborations

The original EPICure study was really important, as it was the first of its kind to look at extremely immature babies in detail.  Several other studies are now going on around the world and the EPICure team are part of these developments.  In the New Year we hope to start working with our French Colleagues on a new collaboration with their new study EPIPAGE2!