CP-AGE: The Cerebral Palsy Adolescent Growth Evaluation

We are doing a study to understand how walking ability changes as young people with Cerebral Palsy (also known as CP) go through their teenage growth spurt. We know that some young people with CP will experience increasing difficulties with walking during this time period. This might be to do with the development of pain, tightening muscles or joints, fatigue or other reasons. We don’t yet know who these children are, or if there is anything we can do to help prevent these declines. We hope to answer these questions through collecting infomation & taking measurements from young people with CP before, during and after their teenage growth spurt.  We will then analyse the information we gather to see if we can detect key predictors of decline.

Children with a diagnosis of CP, who are aged between 10 and 12 and who can currently walk with or without aids are eligible to take part. We hope to include 120 children across Ireland in this study.

This study is funded by the Health Research Board in Ireland.

CP-AGE is based at the CP-Life Research Centre, School of Physiotherapy, RCSI University of Medicine and Health Sciences, Dublin. CP-AGE is being run in collaboration with the National Centre for Movement Analysis at the Central Remedial Clinic and other partners throughout Ireland.

Who can take part?

Children with a diagnosis of CP, who are aged 10, 11 or 12 and who can currently walk with or without aids are eligible to take part. We hope to include 120 children across Ireland in this study.

What are we doing?

The CP-AGE study involves regular measuring of the following until your child completes their teenage growth spurt:

  • Annual measures of walking patterns (using 3D motion capture equipment)
  • Annual measures of gross motor function (walking, hopping, jumping, climbing etc.)
  • Six monthly clinical assessments of height, weight and the strength and flexibility of the legs.
  • A set of questionnaires relevant to walking, healthcare provision and quality of life.
  • You will send us updated height and weight measurements taken at home 3 months after each assessment.

We will minimise travel for you where possible, and we have some budget set aside to reimburse travel costs.

Is the study confidential?

All the information we collect will be kept strictly confidential.

With your permission, we can share a summary of your child’s findings with you which you can give to your healthcare teams if you wish. Also, with your permission, your child’s gait analysis results can also be copied to their file in the Central Remedial Clinic if they have one. This will be added to their healthcare record and will avoid duplication where possible.

We will also ask your permission to store a fully anonymised version of the information we collect on a database for future research.  You can opt out of this part if you wish.

I want my child to take part! What do I do next?

If you do wish for your child to take part please click on the button below to register your interest. You will be emailed a copy of the parent and young person information leaflets. Please read these carefully. A member of the CP-AGE research team will contact you shortly using the contact information you provide on the form to schedule your child’s first assessment. If you change your mind and no longer wish to take part, please let the researcher know when they call or email and you will hear no more about it and your details will be deleted.

To take part

The Study Team

Dr Colm Daly is leading the CP-AGE project. He is a physiotherapist based at the CP-Life Research Centre, RCSI and the Central Remedial Clinic. Colm can be contacted at colmdaly@rcsi.com or 01-8542331

CP-AGE is overseen by a project steering group.

  • Dr Ailish Malone, Programme Lead, CP Life Research Centre, RCSI
  • Dr Jennifer Ryan, Director, CP Life Research Centre, RCSI
  • Dr Damien Kiernan, Manager, National Centre for Movement Analysis, Central Remedial Clinic
  • Dr Stephen Madden, Data Science Centre, RCSI
  • Dr Adam Shortland, Kings College London/Guys and St. Thomas’ NHS Trust
  • Dr Aisling Lyons, Consultant Paediatrician, Saolta Hospital Group/HSE West
  • Mr Enda Kelly, Consultant Orthopaedic Surgeon, CHI

CP-AGE is also overseen by a Public and Patient Involvement (PPI) Advisory Group.

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