December 2008

Thank you to you all for agreeing to take part in the EPICure2 Study.  We thought we would send you a newsletter to keep you informed about what stage the study has reached at present.

The study has proved to be much bigger than we thought and we now have over 1000 babies growing up after extremely premature birth!!

What’s happening now?

As you know, when your child reached his/her 2nd birthday we sent you and your child a pack containing a teddy bear and a folder with a questionnaire and an information leaflet.  If you have not yet returned the questionnaire to us, its not too late – just put it in the envelope that we provided and put in the postbox – you don’t need to put a stamp on it.  We would very much like to  have your questionnaire as it means we have to ask you much less when we see you in the new year!

For the next stage of the study we would like one of our trained doctors or nurses to carry out an assessment on your child just before his/her third birthday.  This assessment can be carried out at your local hospital clinic, or at home if you prefer.  The assessment will involve a medical examination and the assessor will also check your child’s development using a test called the Bayley-III.  For your child this involves playing games, looking at books, and doing some simple puzzles.  There is nothing in this assessment that is uncomfortable or hurts.   We will contact you by letter a few months before your child’s third birthday asking you where you would like the assessment to take place.  Please return the form to us as soon as possible so that we can start to make the arrangements. 

After the assessment we will send you a written report detailing what the assessor found and we can send a copy to your GP, if you wish.

Website

You may be aware that we carried out a similar study in 1997 on babies who were born at www.epicure.ac.uk and much more will be on there over the next 12 months as the results are published of our last assessment.

More information about EPICure2 is also on this website.  If you would like to see a “parents forum” on the website where you could contact other parents in the study but remain anonymous, please email us and let us know.

We would like to wish you all a Happy Christmas and our Best Wishes for the New Year and we hope to see you all in 2009!