
Cerebra’s BEOND project is asking for parents and carers of people with Prader-Willi syndrome aged 1 and above to take part in a survey-based study. The study can be done online (and you can save it as you go along so you can dip in and out when you have the time), or you can request a paper copy to complete as and when you can. The study completed online in one go should only take up to one hour.
This is looking at the behavioural, emotional, physical and mental health of people with PWS (and other genetic syndromes, neurodevelopmental disorders and intellectual disabilities) to gain a better understanding of any challenges faced and try to then develop better methods of support.
The hope is to also repeat the study again in the future to revisit the families who take part to monitor any changes.
FPWR UK and PWSA UK are both really excited about the study and grateful for Cerebra for their work on PWS. The more participants that take part, the better their data and we would really urge everyone who can to take part.
If you would like to take part, please click here.
Postal correspondence address:
Prader-Willi Syndrome Association UK
C/O Metcalf’s Commercial Decorators
3 Deer Park Road
Moulton Park
Northampton
NN3 6RX
Phone: +44 (0)1332 365676
Email: admin@pwsa.co.uk
Registered Charity number
England and Wales: 1155846 Scotland: SC053700
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