In this now well-established tradition, the EPICure team extend their warmest Season’s greeting and New Year Wishes to all EPICure families.
We start where we left off! 2012 ended with much media attention due to the eagerly awaited publication of the EPICure 2006 results. We achieved excellent media coverage which you can find on our website http://www.epicure.ac.uk/news/epicure-studies-in-the-news/. We have several new sections in the website and we will post the information about joining EPICure@19 there as well. 2013 has been a busy year preparing for the EPICure@19 phase of the study. The EPICure 1995 ‘children’ are now fully grown up and their stories both personal and medical will help us understand what challenges extreme preterm babies face as they turn into adults. The detailed assessment of young adults has required a considerable expansion of the EPICure investigators team to include experts in various areas of adult medicine. In addition to the new study, we have a brand new Participant Advisory Group (PAG) that aims at getting our EPICure participants and their families more directly involved in the research process. Some of the young PAG members have kindly shared their story and their experience of being part of the study development. Even this year’s Festive card was designed by one of our young PAG members. Read on for more details also on how you could become involved by joining the EPICure PAG. Finally it is not all about EPICure@19 as we share with you very early plans of a follow up study with the EPICure 2006 group. Meanwhile we are busy analysing and preparing a report about EPICure@16 – a big thanks to all of you who contributed to that too. Don’t worry if you didn’t manage to contribute to earlier EPICure studies or to EPICure 2 last time – we will still welcome you to take part in our new studies. If you have moved or have a new address or contacts (email, mobile, etc) please let us know as we would like to keep in touch.
We are finally underway! By now those of you born in 1995 should have received the EPICure@19 information packs that were sent out in November. If for any reason you have not heard from us please contact us on email@example.com and we will be happy to send you a new pack either by email directly or by post. We really hope that as many of you as possible will take part or to at least find out more, were it only for the chance to travel to University College Hospital in London, all expenses paid, and meet some of the EPICure investigators for a friendly chat. The last time we saw some of you, you were 11 years old so we do expect a lot of change. The EPICure team will be delighted to see you and answer any questions you may have, independently of your final decision of whether or not to participate. The official launch of the EPICure@19 phase of the study on Monday 18 November was marked by a press release by the University College London (UCL) press office. We thank those of you who have kindly contributed their thoughts and expectations at taking part in EPICure@19. You can read these in the full text version of the press release on the EPICure website news section http://www.epicure.ac.uk/news/. The EPICure@19 launch was timed to coincide with World Prematurity Day (actually on Sunday 17 November). This is an international initiative to raise awareness of the challenges facing premature children and their families. Charities world wide and international health organisation such as WHO networked over that special weekend in November to spread the word. For the event EPICure shared some of the relevant links on Facebook and then joined forces with the charity BLISS for a one hour Twitter relay.
Our new staff
The EPICure studies have always relied on a broad spread of experts to unravel the complex problems associated with premature birth. This is ever truer with the EPICure@19 team of investigators as we have been joined by experts in the fields of cardiology, respiratory medicine, neurology, psychology and medical imaging. Many of these people will work behind the scenes but two new faces will certainly become familiar to those of you who decide to visit us in London. These are Dr Jo Beckmann who will carry out part of the medical assessment and Dr Helen O’Reilly who will look at aspects of your thinking and emotions. We have asked them to introduce themselves.
Jo - I am a Paediatric doctor who very much enjoys working with babies, children and families to improve their health and wellbeing. I have worked in various hospitals in London, including UCLH. I started my first year at Medical School the same year that the EPICure babies were born, and for me, it is a real privilege to be able to contribute to the EPICure@19 study to help understand the health of extremely premature babies from birth to adulthood. I have always had an interest in research, and also hold a Masters degree in Tropical Medicine and International Health. Outside of work, I enjoy travelling the world, making music and solving math puzzles.
Helen - I am a research psychologist, with a particular interest in child development. My past research has mainly involved working with infants and children looking at early onset epilepsy and autism. I am very excited to be part of the ‘EPICure@19’ study, to gain a better understanding of the long-term outcomes following extremely preterm birth and to help identify the support needs of these young adults.
The EPICure Participant Advisory Group (PAG)
The active involvement of participants in the planning and other aspects of a medical study is regarded as increasingly important by the organisations that fund medical research, by the research establishment that host these studies and by approving bodies such as Research Ethics Committees. We are delighted that so many of you have agreed to become part of the EPICure PAG and feel that it is a privilege to work so closely with the very people that make the research possible. If you are interested in joining the EPICure PAG please contact the EPICure Office by email on firstname.lastname@example.org or by phone on 020 3108 2045 - we will be very happy to hear from you. We have asked a few of the new PAG members to share their thoughts about joining the PAG and work with us on behalf of all participants to make the study more friendly and communication more effective.
Below we find out a bit more about Ellie Campbell and Georgina Watson.
Ellie: “I’m Ellie, I’m 18 years old and I was born at 25 weeks in August 1995. I’m currently studying Film and Literature at the University of Warwick after achieving two A’s in English Literature and Film Studies and two B’s including History at A-level this summer. Being an extremely premature young adult, born at 25 weeks, I see no obvious differences between myself and other people of my age group as there is nothing that prevents my day to day life as I am able to partake in my studies and enjoy university life like everyone else. Growing up I had surgery on a tight Achilles and in July of this year I had surgery for my protruding jaw however there was no evidence that this was due to my prematurity and even if these were directly related they do not affect my ability to live my day to day life. I am passionate about film, TV programmes, music and literature and so fulfil these hobbies in my free time as well as socializing. I also take part in the University’s radio and TV station as well as the student newspaper with no problems at all and go to numerous concerts and festivals. I decided to join the EPICure PAG as I wanted to give a small something back to EPICure as their research will go on to help so many. Also I decided to continue participating in EPICure’s study as my story may give hope to parents of an extremely premature baby and perhaps give them an idea as to what to expect in the future. Another reason why I decided to partake further in EPICure is that I am interested as to whether there are any effects to being born extremely prematurely that have not yet been discovered as none seem apparent.”
Georgie: “If at first you don’t succeed, then boy have I tried, tried, and tried again! Hi I’m Georgie and I am an original 1995 EPICure baby. I’m delighted to be part of EPICure@19 and have been part of the preparation of the next step which you will all be invited to early next year. I look forward to meeting some new faces then! I think it’s important to take part; perhaps as a group we’d discover we share common interests and difficulties. One small step for us, and together, one giant leap for babies around the world. A little bit about me, I did find my early school years difficult and struggled to keep up. My main weakness has always been maths and I’m diagnosed dyslexic and following consultations with educational psychologists it was decided the best for me was to repeat year 3, which I did and I can honestly say it was the best thing I ever have done. I gained A*- C in ten subjects in my GCSE’s and I’m currently in my last year of Sixth Form, almost there! I’m doing A-levels in English Literature (which is tough for a dyslexic), Art and Classics, but to spice things up a bit I’m doing Russian as an extra (it’s easier than you think, all the letters are back-to-front anyway!) I guess my motto would be that “you should never be afraid to ask for help” I always find that two minds are better than one when you’re stuck with something. My mum always says to “shoot for moon and if you miss you’ll land among the stars” so that’s what I’ve been working towards. Art is my strongest subject and I’m applying to study Fine Art at University (if anyone at UCL is reading this, please put my name on the list!). Do I feel special? Yes. Do I feel different? Yes. Has it felt difficult at times? Most definitely, but it makes me who I am today and I’m proud of myself and what I’ve achieved!”
EPICure2 – births in 2006
When we followed up the first EPICure children we saw them at 6 and 11 years. Much of what we found at 6 years was repeated at 11, so we made a decision that we didn’t need to do both assessments. We are planning a new study in 2015 when the children will be 9 years old. We have yet to find the funding to do this and will apply for the funding next year. We will keep you up to date with progress as the year goes on and whether we are successful. Doing the study at 9 years means we shouldn’t have to repeat it in adolescence and all children will be in Junior School then. As we did at 11 years before we will invite some of you to come to UCL so we can use special equipment to make our assessments.
A word about this year’s Festive card
The EPICure 2013 Festive card comes directly from the creativity of EPICure 1995 participant Georgina Watson who as we know from her quote above wishes to study Fine Art here at UCL. We were delighted to work with Georgina who provided a selection of designs that she realised using different techniques. It was not easy to choose but we felt the ‘word’ tree really stood out and we hope you enjoy the festive cues this card provides. If you have a design in mind for next year we are very happy to hear from you. Also if there is something you would like to contribute to next year’s Newsletter or some initiative you would like to share on FaceBook for example, please just let us know by contacting the EPICure Office http://www.epicure.ac.uk/contact-us/.