The Neuro-GD Study – Looking for volunteers


Describing and understanding neurodevelopmental conditions of genetic cause.

Why are we doing this research?

We are looking for volunteers to take part in a research study that we are doing about genetic forms of neurodevelopmental conditions.  We are aiming to describe how changes to the genetic code affect people with neurodevelopmental conditions.  Our hope is that this will:

i) help us better understand people with neurodevelopmental conditions and genetic changes

ii) improve our chances of developing new therapies

iii) make it easier to do clinical trials to test new therapies

Who can take part?

At the moment we are recruiting people with SYNGAP1-related intellectual disability and fragile X syndrome as well as a comparison group of people without a neurodevelopmental condition.

What does the research involve?

The research involves meeting with us to do some or all of the following, depending on what can be managed: questionnaires, puzzles and a measure of brain activity called an EEG.   You do not have to be able to do all of these to take part – any information we can gather is helpful.   

These tests would normally be done at our research centre in Edinburgh, or sometimes we can arrange to see people at home. 

If you have a neurodevelopmental condition then we will give you a personalised feedback report from some of the test results which may be helpful when planning and organising care.

Where can I get more information?

If you are at all interested in taking part, or even just want to find out more about what we are doing then please get in touch. 

You can contact the researchers directly by email or telephone if you have any questions:  Damien Wright: 0131 537 6431; [email protected]