If you live in the UK and are a parent of a boy with TSC, between 4-6 years old or a baby boy with TSC between 12-25 months old and would like to help with research into TSC and development disorders, read on to find out more.

Researcher Jillian Sullivan, a PhD student at the University of Cambridge working under Dr Ayla Humphrey, who is one of the TSA’s Professional Advisers and who sees families at the Cambridge TSC clinic, has contacted us about two studies:

• a study of boys with TSC, between 4-6 years old: this is just a simple one-off postal questionnaire.
• a study of male infants 12-25 months old: this needs a face-to-face observation at three different time intervals (three to six months apart) and parents will be invited to visit the Autism Research Centre in Cambridge but if needed a researcher will make a home-visit.

Jillian says “We hope that these studies will reveal the different patterns of abilities and the relationship between ability areas in infants and toddlers with Autism, Tuberous Sclerosis, Prader-Willi syndrome, language disorder, and Down’s syndrome. It is also hoped that this research will give an enhanced understanding of the links between these disorders as well as furthering the quest to subtype developmental disorders”.

If you have a child with TSC of these ages and would be interested in receiving more information on the studies please contact Jillian Sullivan on jcs69@medschl.cam.ac.uk or 07979 072 531 and leave your name, address, and telephone number.

There is no obligation for you to participate and your care will not be affected in any way if you chose not to take part. The study will be explained in detail and any questions that you may have will be answered.

This entry was posted on Thursday, May 8th, 2008 at 3:08 pm and is filed under Research.