December 2015

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In good time for this Festive Season we are sending you our yearly news update about what EPICure activities we have been up to this past year.

As always we have you all, the participants and their families, to thank for making the studies possible in the first place; your willingness to take part in the various phases of this long term medical research are essential to maintaining the study. Thank you also to all of you who have been in touch to inform us of address changes through the year. We are very grateful that you remembered us at these busy times.

2015 has been a very busy year for the EPICure team, we have been very actively engaged in completing the EPICure@19 assessments.  We completed all we could in September and have started to check all the data and provide some early analyses. So far we are extremely excited about the results, which allow us to chart the course of our young people through to adult life. 

This is not the end, so to speak, and we have now developed new plans and applied for funding to carry out a similar set of tests on a subgroup of the younger participants from the EPICure2006 group. This study will be called EPICure2@11. Meanwhile the foundations for EPICure3 have been laid ... More on these stories below …

 

EPICure@19

Facts, figures & thank yous

The study officially started in February 2014 and we finished our assessments at the end of September 2015. During this time, we have seen 198 participants from the 1995 study cohort with 65 being from the comparison group who were born at full term, their dedication to the study in particular is really exceedingly helpful. Many of you brought a family member or a friend with them so we have had the pleasure of meeting almost 400 people. Dr Suellen Walker who was in charge of the touch and sensitivity tests and who also ran a similar test when you were 11 years old, remembers many of you and is amazed at how grown up you all looked, or is she just getting older? Our most sincere thanks to all of you who took part and by doing so helped us collect valuable data, we knew it was a big ‘ask’ to give up two days to help us and travel to London or entertain us at your home. We think this is a fabulous result.

The results will allow us to build a very good picture of general health and wellbeing in the EPICure young adults and putting the data together with the results from earlier studies will allow us to have a unique view on preterm development. Of course we did take the opportunity to carry out some new and novel studies that will help us explain why any differences we find are there.  This is the very first national study of people born at such an early gestation and we have had requests to work with several other studies from other countries to compare and contrast how different health systems affect development.

The success of this data collection phase of the study has relied on many people working together. As well as you all – of course – our festive thanks go to all the staff at the UCLH Clinical Research Facility that provided the venue for most of the assessments and the radiographers’ team at the UCLH MRI facility for their superb support and collaboration throughout the duration of the study. Sincere thanks also go to the all the staff at the busy and bustling 4* Radisson Blue Edwardian Grafton Hotel where most of you were accommodated, and where we hope you had a comfortable and pleasant stay.

Last but not least we wish to thank those of you who, although unable to attend in person, invited the EPICure team to your homes to carry out part of the assessment. Thank you for making the EPICure team feel at home quite literally and for allowing them to work efficiently and collect the study information.

 

MRI images

Just under 150 of you braved the MRI scan test that was part of the assessment. As a gesture of thanks for laying still & possibly going for an afternoon snooze for the 60-80 minutes of the test, we have pledged to send each of you, your very own brain images. The images are enclosed with this Festive newsletter and card. Thank you to those of you who contacted us in the past year or so asking about the images and apologies if it took a little while to get back to you. There is a very good reason behind this waiting time. A consultant radiologist, a doctor who specialises in interpreting these images, examined the MRI scans for each and every one of you to see if there was something that would need reporting to your family doctors for follow up. After that the appropriate brain views for each of you had to be selected, put in individual documents and printed. We hope you find them interesting and that you are able to recognise yourselves especially from the profile view.

 

GP reports

The tests that were part of the EPICure@19 assessment will provide valuable data for our research and can also identify ongoing health and wellbeing problems. In the few cases where problems were identified we have formally contacted your family doctor to inform them of the findings. We therefore hope that for some of you taking part in EPICure@19 has led also to helping you resolve some of these issues.

 

Data Analysis

Data analysis is now starting in earnest. We are fortunate that the wider EPICure@19 team consists of world class experts in their respective fields. We will be looking at a range of broad areas in our analyses:

  • Learning / Education

  • Life course

  • Mental wellbeing

  • Heart and circulation

  • Breathing and lung health

  • Growth and development

  • Brain & nervous system

  • Eye health

There will be of course a lot of “cross-talk” between these different areas and we will all work together across our areas of interest to understand the quality of life for EPICure participants in context.

 

Results & dissemination

The EPICure investigators will share the findings from each area of investigation at medical research meetings and conferences in the form of presentations and/or posters. Longer and more formal reports will be submitted to medical and research journals for publication. Presentations and publications are very important steps in the research process that allow researchers not involved in the study to critically review the methods used and data interpretation performed by EPICure investigators and provide valuable feedback. With the official dissemination of the results as usual will come press releases and media attention. We will post understandable summaries of the findings on our website as always and keep you well informed of any news items relating to EPICure and website updates so please continue to follow us on FaceBook and Twitter for timely updates. We must as always reassure you all that any information made public will be of course completely anonymised that is it will not be possible to identify individual participant from the results.

 

So Where Next?

We have been very excited by the response of other doctors to the work we have done on EPICure2.  This is important not only for understanding how outcomes have changed but also we took the opportunity to look at variation in practice and organisation of services for extremely preterm babies.  These have suggested several changes in what we do might be sensible – we are working with NHS England to try to do this. 

We have also been asked whether we are intending to see these children again to study outcome in middle childhood, as we did with EPICure. The answer is yes – if we can obtain the funding.  So this summer we developed a new application to the Medical Research Council to do just that.  We should know in the early spring if we have been successful, and we will of course let you know.  Because of the difficulty in seeing you all it is probable we will focus on a couple of regions but that is for the future.  For reference we have called this EPICure2@11 as the children will be 11-12 when we see them, hopefully.

We are also asked what is the current situation.  At present we don’t really know other than we can see improved survival in the figures from neonatal units, which is reassuring. However we do need to combine a range of information sources to do it again (still the NHS systems are not up to doing this complex type of study) so we have been talking to all the regional representatives and those in Scotland, Wales and Northern Ireland, who are all very keen that we think about a new study so we have started the process off and put in a first application to do EPICure3!  It may not start until 2017 if we are lucky and get the funding but there is such enthusiasm we hope that it is successful!

We have been rather inundated with Journalists recently and we have decided to post their requests on Facebook, but please only take them up if you really want to. Thanks to all of you who have helped with their stories.

So there we are – another very busy year and hopefully a successful year to come – all thanks to the great help and support you have given us.  We wish you a great festive season and will keep you up to date with the news as it comes.

Best wishes

From the EPICure Team