December 2011

Newsletter December 2011

Season's Greetings from the EPICure team!

Once again the festive season gives us the opportunity to bring you the latest news on progress and developments in the EPICure studies.

The Investigators team are continuing in their work in processing and interpreting the data you have kindly helped us gather by giving your time over the past years. Since our last newsletter we have published several papers in important medical journals and have several more under consideration for publication. Our thanks as always go to you for making EPICure possible in the first instance and for continuing to support the research so far; and hopefully in the future as well. You have kindly given us a lot of information; this needs to be worked through carefully and then made public – it all takes much time!! 

Once again we thank the premature babies’ charity BLISS for their help with the Christmas cards. By buying our Christmas cards from BLISS we have contributed to this charity’s excellent work with premature children and their families.

Since last year …

After last year’s move from Nottingham University to University College London, we are now well settled in our new offices within the UCL Medical School Building and feel very much part of the wider UCL Institute for Women’s Health. 

We welcome Dr Andrei Morgan to the EPICure Investigators’ team. Dr Morgan joined us in the Spring as a part-time researcher. He will devote his research time looking at the impact that changes in clinical care and organisation have had on the findings of EPICure. Many of these changes have been influenced by EPICure and Andrei’s research will confirm that these changes have led to benefit, we hope! At the time of writing we are starting to compare information from EPICure to other national data, but we will keep you informed of course, so keep a close eye on the EPICure website especially the News section on the home page where we post regular updates.

The EPICure  website

Over the last 12 months the EPICure website has been progressively updated and more recently we have revised and brought many sections up to speed with the latest developments and publications. You will also notice that a few sections are in progress. Please bear with us as we prepare the content for these sections.

Some of you have kindly shared your stories with us and we with your consent we will publish them on the ‘Children’ page of the EPICure website. We are always happy to hear from you and we trust that sharing these stories brings hope to anybody who visits the EPICure website because affected by issues of prematurity.

We plan an even more complete revision and upgrade of the website implementing a new content management system that will make the website still more user friendly and accommodate new sections and links to our very own EPICure  FaceBook and EPICure Twitter pages, over the next few months.

EPICure  - The first study, births in 1995

Just like the EPICure children themselves, this study is now 16 years old and is entering a whole new exciting stage. Little is as yet known of the very long-term effects of extreme prematurity and to what extent these will affect adult life; it is in this unexplored area of medicine that the EPICure Investigators hope to shed some light.

We will do this in two phases: 

EPICure@16 is in progress – once the Ethics Committee have agreed our proposal we will be writing to all families again.  This has two aims – firstly (and really briefly) to ask you to tell us how school work is going – there is much interest in this as it also helps new EPICure parents plan for their child’s education, you may have seen the comments made about our article on summer birthdays – and, secondly, to ask the EPICure children for permission to contact them directly (instead of through mum and dad) as they are now able to make their own choices in this.  We expect to start this soon in the New Year.

EPICure@19 - 19 years will be the next age at which we would like to check on their progress; this requires new funding and our application is currently being considered by the Medical Research Council.  This will be a little different than previously and we would like to be able to invite all of the young people (both EPICure and the really helpful volunteers in the comparison group) to visit us in University College – we have great new facilities here and it will give Professor Marlow a chance to say thank you in person for your help.  More information about this will be available soon.  We will of course be paying for any travel, expenses and accommodation.  UCL is really easy to get to by public transport and very close to the west end and the heart of London.

Suffice to say that 2012 will be a busy year for both the Olympics and on the EPICure front as we start the process of gathering this valuable information and planning for 2014!

EPICure2 – births in 2006

This study is still very much active in terms of the processing and analysis of data previously collected.  There are three papers about to be published and the two most important papers – about changes in survival and developmental outcomes – are currently being considered by a major journal. We will update you as this information become available. Please see the news and publications sections of the EPICure website for more details. 

Our next step is to plan for a school age assessment for a sample of EPICure2 children – this will be really important, as it is only at this age that we can really compare detailed outcomes.  However this needs funding and we will make that application next year.  We will let you know how we get on!

And finally … 

We wish you all a wonderful festive season and a Happy New Year as EPICure celebrates its 17th year.  
Without your help and input neither the original EPICure study nor EPICure2 would have been such great successes – we hope that we can continue this important partnership with you in the future.

NEIL MARLOW
Professor of Neonatal Medicine