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What is your experience with diagnosis services in the UK?

Posted by: | Posted on: May 15th, 2014 | 0 Comments


Dear parents

I am currently collaborating with a group in Israel led by Dr. Benjamin Gesundheit MD, Ph.D which is developing an international multi-centre study on a large group of children with autism (360) and 90 typically developing controls. The study aims to analyse 500 different immune markers to identify any possible association with autism and potential correlation with the severity of the condition. In a way it is an attempt to characterise autism at a molecular level, focusing on markers of the immune system, known to be frequently deregulated in these children. The study does not offer any intervention or treatment avenue.

There are a number of requirements to meet in order to participate once the ethical approval has been confirmed here in the UK. One of them is for the children to have received an ADOS and/or ADI assessment as part of their diagnosis evaluation and for their parents to be able to demonstrate of the scores obtained and/or severity of autism of the child.

We know from experience that obtaining a diagnosis of autism in the UK can be a complex and lengthily process. Despite being held as gold-strandards in national guidelines, there is no systematic use of ADOS and ADI for diagnosis and the diagnostic procedures vary greatly geographically.

We are seeking your help by sharing with us your experience of diagnosis services in the UK by completing this short questionnaire. Assisting us in gaining some information on whether your child received an ADOS and/or ADI will help us develop the right strategy to enrol as many children as possible in the UK . The questionnaire is very short and should not take longer than 10 minutes of your time. We thank you in advance for completing and and for sharing this with other families of children with autism. This is a very important and exciting study which I hope will involve children in the UK.

We are also seeking control participants, so any family with a child typically developing, interested to contribute to this, please do contact us.

I look forward to receiving your answers. I will communicate with you once the results of the survey have been analysed and we are able to call for participants.
Best regards
Lorene Amet D.Phil. M.Ed (Autism)

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