December 2016

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21 years old and still going – thanks to you all …

We are so grateful for everyone who has contributed to our studies up to now and in the future!

This year is a huge landmark for the studies – we have finished the EPICure@19 visits and are just starting a new study to examine the EPICure2 children at 11 years of age.

Other New International Studies

We are starting new studies to compare what happens to children and grown-ups who have been born extremely preterm in France, Melbourne and Germany, and we have a major collaboration with a large number of studies around the world (the Adult born Preterm International Collaboration or APIC http://www.apic-preterm.org/), as interest in what happens to very premature babies as they grow up starts to develop.  These studies are really important as we can learn from each other about the development of these very special people, and when we see parallels we can be much more confident about our findings, hence the flurry of activity!  We have worked with the groups in France before and have just produced our first paper with our Australian colleagues.

Just to reassure you, when we do this we take extensive precautions to remove anything from the information we use that might identify anyone. This is to ensure we can get the maximum information from our studies and make best use of your efforts in helping us to understand this very complex area.

EPICure2@11 - The Grand Launch!!

We have recently written to all of the parents who are part of EPICure2.  The Medical Research Council have funded a new study, which we have called EPICure2@11 as it started 11 years ago.  The EPICure studies have been acknowledged as one of the MRC Cohorts, which is a testament to all of you and of the value of the information you have helped us collect.

We have two aims – firstly, to discover how all of the children are doing at school and, secondly, to visit the schools in two areas (London and the East Midlands-Yorkshire areas) and perform a more detailed follow up similar to the study we did 11 years ago, as part of the first EPICure study.

The first aim, to find out how everyone is doing at school, we intend to do anonymously, as the Department for Education has a database on which everyone’s national school tests are kept.  We have a system through which we can obtain information on everyone anonymously, so even we will not know whose school tests are whose, but at least we will be able to have a reference to show that the children we have seen are representative of the whole group and compare to what we found 11 years ago!

Of course we know that this will mean that we are not going to see everyone face-to-face, but the size of the study – over 1000 children – means it is really impractical to do so: we will just concentrate on seeing as many of you as we can in the two areas.  We will of course make the findings available to everyone, but we are sorry if you are disappointed not to take part directly if you happen not to live in the chosen geographic areas as detailed above.

We will keep you all up to date with this by mail and on the website.

EPICure@19

We managed to see everyone who wanted to take part by the Spring of this year.  We have all the data entered into our computer and have started to look at the results. Over the next 6 months we should be able to publish a lot of information from the study. 

Established EPICure-watchers will know that this can take some time as we have to produce publications and then they have to be checked, reviewed and accepted before they come out.  We haven’t been sitting around though and we have presented to the academic community preliminary data on several of the main findings.  We also have a lot of work processing the brain scans and eye pictures to start to put together the whole picture. 

So far we have presented findings in London, Chicago, Baltimore, Rome, Geneva and Copenhagen (no more than one trip each!!), but everywhere we have been the study has been very well received and people are very excited about finding out about this new chapter in the EPICure Study.  As we finalise the study findings we will prepare a summary for all of you that helped us out so you can see what it all means. We hope to send this out in the New Year.

Key points so far are – at 19 years:

  • Similar proportions of young people born premature and full term groups are still in Education (around 65%)
  • For those of you that aren’t similar proportions are in full time or part time job
  • Scores on all of our thinking and learning tests have remained much as they were in the previous studies, with no deterioration
  • Lung function tests show that there is no worsening of lung function and no evidence that lung function will worsen as adults – keep away from smoking and smoky places though

Thanks once again for your help and commitment – the study isn’t over yet! Hopefully we will be in touch in a few years’ time to see you all again. Meanwhile we will keep the website updated with news and information.

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Some of you may have heard that we had applied for funding for a new study from the National Institute of Health Research to start in 2017.  Sadly this was not funded but we may be able to do it in a different way.  We think it is important to do another study, as we have seen big changes in how the services are organised and a continuing increase in survival for babies admitted to neonatal units – but we know this isn’t the whole story.  We have a cunning plan, however ……

We wish you all the very best in the Festive Season and for 2017

Neil Marlow

Samantha Johnson

Laura McCormack and the whole EPICure Team