December 2006
As you know the EPICure study has extended to have additional breathing tests at Great Ormond Street Hospital and the Institute of Child Health, London. All children visited by the assessment team living within two hours travelling to London were invited to attend the respiratory laboratories for these extra tests.
We have had an overwhelming response! Over 60 children from as far south as Somerset and as far North as Birmingham have successfully completed their assessments and enjoyed doing it! Thank you to these families for their participation and support! There are still some children to be seen and apologies to those waiting for appointments – you will be contacted soon! We realise that not all of you have returned your recruitment forms to us yet, but it’s not too late, so post the forms back as soon as you can.
We’ve not been to Great Ormond Street Hospital yet – what do the tests involve?
The tests are done over 2 days and are fun! Our special machines help us work out how big your lungs are, how much puff you have, and how fit you are. We ask you to breathe normally through a mouthpiece while watching a video or “Nessy the Dragon” on a computer screen. Other tests involve you taking big breaths in and out to blow out candles or knock over some skittles like you might have done at school.
We will then do some tests to see how fit you are. This involves you having stickers on your chest and wearing a funny purple mask while you cycle on an exercise bike for about 15 minutes. You can watch the telly while you do this but you may feel puffed out at the end! We then give you a special belt that monitors how active you are for a week.
On your second visit we will do some more blowing games while we see how sensitive your breathing tubes are (you can read a magazine while we do this!) and we will do a test on your arm to see how much you feel hot and cold, and if you have any allergies. None of the tests hurt. We will give you some lunch while you are here, pay your travel expenses, and of course, there is a small reward for all your efforts!
We still need your help
We have had a fantastic time assessing all the EPICure children and their friends, but we still want to see more of you! For continued success in the EPICure study we would like to see as many of those children seen in school as possible. In order for us to see how well ‘early babies’ lungs have grown we need to see children who weren’t born early as well. We would like you to recommend a friend to do these tests. The tests will be EXACTLY the same as what you did, and of course they will get the same reward! All we ask is that they are 10-11years old, not born early (i.e. not more than 3 weeks before they were due) and are willing to attend for 2 separate days like you did.
What are we going to do with all this information?
We hope that the focussed respiratory studies at GOS Hospital will link in with the tests performed in school and will give us much more information about how the EPICure children’s lungs have grown and developed and how this may impact their daily activities. The previous EPICure studies have already been published in some of the world’s most important medical journals and have helped to improve how preterm babies are treated.
Where can we find out more information about EPICure?
You can log onto the EPICure website at www.epicurestudy.com which has details of the results from the previous studies as well as the current study here in London.
If you would like to discuss the London studies you can contact Jane Kirkby or Liam Welsh in the respiratory laboratory on 020 7905 2836. We can answer any questions and can arrange an appointment at your convenience.
Once again we would like to say a big THANK YOU to all the EPICure children and their friends as well as all the parents who have kindly given up their time to help us with this vital research.
We would like to wish you all a Merry Christmas and Happy New Year. We hope to see some of you again soon!