This will be the next study and will start in January 2014. We would like to invite everyone to spend a day with us in London (all expenses paid, including overnight accommodation!) as some of the research studies need sensitive equipment that is difficult to move about.  However they all will be interesting and fun to take part in. We will write to you all in September 2013 with more details and start to plan these appointments by the end of the year.

Why is this important?  Recently it has become apparent from our own news and other studies that many of the children we were worried about seem to be making important strides as they transition to adulthood.  Knowing about this is really important for us as doctors and for other parents and the information may be really helpful in modifying our advice to doctors and to parents.

We hope that as many of you as possible will feel able to participate in this exciting new phase when the time comes.

Please keep in touch and feel free to contact us any time if you have any queries or if you wish to share your news with us.