December 2018

December 2018



Our Newsletter seems to come around earlier each year!  It is now 23 years since we started and we have just completed (or very nearly) the EPICure2@11 study. It has taken us longer than we anticipated because of the changes in confidentiality law (there is some information about this over the page) and the challenges of getting into schools to carry out the study.  Everyone who has contributed has really helped out and we are very grateful for the support of parents, who are often more effective than we are in persuading schools to help us with the study. 

Thank you all so much.

We can look back at a huge series of studies that has made EPICure one of the most important and influential studies in the world. All the different parts are set out in the figure. This is due to the help and support you have all given.

 Next steps

We are starting to plan how to use the excellent information now collected in hospitals to provide the information on which to base a new study – EPICure3 and will be applying for more funding to carry out the later follow up studies in 2019/2020. newsletter_flowchart.jpg

We are also considering what would be good times to invite the EPICure2 participants for a further assessment and starting to plan how we fund this.

We suspect it will be a few more years before we contact participants from both studies for another round but as funds and design take such a long time we will have to start planning as soon as we finish off EPICure2@11. We have to decide how best to continue these studies as we do need very much to understand the effects that prematurity has into adult life and also show everyone how things are getting better year on year.

So where are we up to?


We are currently continuing to write the scientific papers from this study – it all takes time and sometimes the journals we use to publish our work take a long time to decide. We have done well with 18 publications completed and eight more on the way – it is a full-time job keeping up with them all! 

We have learnt that many of the areas we have been looking at remain the same over adolescence, not worsening nor improving. This applies to learning, lung function, vision and several other areas. Somethings do seem to be improving, we are seeing fewer mental health problems for example, and many of you are doing well at university and college. We will be able to sit back and look at the overall findings fairly soon but there is still a lot of analysis to do first!

We are waiting to get permission to look at the whole group’s school progress form the Department for Education (anonymously), so we can assess the whole population against those who we saw. This will very much enhance what we can learn from the data.


The last few assessments of the 11-12-year olds born in the 2006 group will happen in the week leading up to the Christmas holiday. We then have to carry out the final telephone interviews for our behaviour assessment, which we will have completed by the end of March. Our research nurse, Emmi Suonpera, who coordinates the EPICure parent study within EPICure2@11, is busy writing up the interviews we have carried out with a small number of you. We will start the full write up in the new year and have plans to deliver some results by the spring.

Other studies

We have started to collaborate with other studies around the world. When we join with them we always use completely anonymised data so no one is identifiable – this is usual practice in long term studies such as these. We are working with colleagues in Australia, the USA, France and Sweden, and with an international collaboration of over 20 studies throughout Europe that have assessed preterm individuals from 18 years through to their mid 30’s!

You can see there is great interest in the EPICure studies and we will ensure that we maximise the value to all of the great support you all have shown.

News of EPICureans:

Congratulations to Samantha Johnson on her promotion to Professor of Child Development in the University of Leicester – Sam is well known to many of you as she started her EPICure career as one of the team who carried out the first 11 year study 12 years ago! This is a great achievement.

And with some sadness, as the funding for EPICure2@11 comes to an end, Laura McCormack our busy study manager and first point of contact for EPICure at the London headquarters is leaving us after 8 years.  She has been fabulous at sorting out our studies – we will all miss her and wish her all the best as she moves to take up a new job with the Alzheimer Society and, I suspect, a quieter life!!

So to the future…

As this round of funding comes to an end, we have to make plans about how we can continue. Most of the work in future studies will be led by Samantha Johnson, as I have to take a back seat coming up to retirement (after writing all those papers and not before!). Thus, during this next 12-18 months the study will move to Leicester as a base, but as I live just around the corner I will be very much involved and continue to answer your emails and letters as we go on.

To all of you the warmest Seasons Greetings and best wishes for 2019.

Neil Marlow

December 2018