GET INVOLVED IN NEW RESEARCH!
You may have seen that the CASK Coalition are recruiting for our first ever international study on CASK disorders. The CASK BINGO study is being done by the University of Cambridge, a world-leading university in the UK. Dr Baker, who is leading the study, has asked for 10-20 CASK patients to take part in this study. If we manage to recruit this number then a unique paper will be published on CASK disorders. It will enable you and your child to get better support, especially in the areas of behaviour and emotion.
The BINGO project is an in-depth, highly renowned study and will require a commitment of up to two hours for the initial online surveys. Our experience is that survey 1 will take approximately one hour, survey 2 – 45 minutes and the last two surveys a matter of minutes.
A following virtual interview takes around 1.5hrs.
We really hope you will take this opportunity to help understand your child better.
If you would like to talk to Laura Hattersley, who has already taken part, feel free to contact her at firstname.lastname@example.org
From Dr Kate Baker at the University of Cambridge:
Are you interested in understanding the strengths and challenges of individuals with a CASK gene difference? Are you interested in exploring why your child might feel, act, learn, or communicate differently? So are researchers leading the BINGO project based at the MRC Cognition and Brain Sciences Unit, University of Cambridge. BINGO stands for Brain and Behaviour in Neurodevelopmental Disorders of Genetic Origin.
Currently, we are inviting children, young people, and adults (ages 3 years old and above) with a CASK gene difference to take part in our research project. Activities which might be offered to you, depending on your child’s age and ability, include
- questionnaires and interviews online (international but must be fluent in English)
- play-based tasks at home (UK participants only)
- EEG either at home or at the MRC Cognition and Brain Sciences Unit in Cambridge (UK participants only)
The information you provide will help us understand the physical, emotional, behavioural, social, and learning strengths and difficulties of individuals with differences in the CASK gene. Together with your help, the information we gather aims to improve support for individuals with a rare genetic and neurodevelopmental condition.
To find out more or register your interest, please visit the BINGO website or contact the BINGO team via email or telephone: