Join the Parent Advisory Group for two new cerebral palsy trials!

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Are you the parent carer of a walking child or young person with cerebral palsy?

Are you interested in helping improve outcomes for children and young people with cerebral palsy? 

Would you like to share your experience and interest to contribute to two new research studies for children and young people with cerebral palsy?

The SPELL trial will assess if an exercise programme to stretch the muscles of children aged 4-11 years with cerebral palsy is better than their usual NHS physiotherapy programme.

The ROBUST trial will assess if an exercise programme to strengthen the muscles of young people aged 12-18 years with cerebral palsy is better than their usual NHS physiotherapy programme.

The SPELL and ROBUST trial team are led by Professor Tim Theologis and Professor Sally Hopewell, University of Oxford. The trials are funded by the National Institute of Health and Social Care Research (NIHR).

The trials team are looking for volunteers to be part of a Parent Advisory Group (PAG).

Through their lived experience of a condition or service a Parent Advisory Group may typically help with:

•considering the perspective of potential study participants

•assisting with the recruitment of children and young people for the study

•providing a fresh ‘critical friend’ perspective on the study design, particularly commenting on how feasible, practical and acceptable it is.

•reviewing and commenting on written documents we will be giving to parents, carers, children and young persons participating in the trial 

The PAG will meet online approximately 3 times a year over the 44-month duration of the trial (from January 2023). One meeting per year may be face-to-face with an option to attend online.  PAG members can attend as many or as few meetings as they wish. Meetings will typically last 1-2 hours with up to 2 hours of preparation reading beforehand.

Travel and time will be reimbursed with a gift voucher according to National Institute of Health and Social Care Research guidance: Payment guidance for members of the public considering involvement in research | NIHR

If you would like to find out more or express an interest in joining the PAG please email morag.andrew@newcastle.ac.uk by the 21st of July 2023. If many contacts are received the roles may be filled before this date.

Please note that children of PAG members will be unable to participate in the SPELL or ROBUST trial.