Centre of Research Excellence in Cerebral Palsy
Cerebral palsy (CP) is the most common physical disability in childhood, occurring in about two per thousand live births. In Australia, there are about 700 new cases each year, and a total of 34,000 people have cerebral palsy. Cerebral palsy produces a higher disability burden (in terms of years of healthy life lost) than being blind, deaf, having severe asthma, diabetes or heart failure.
Despite the frequency and severity of this condition, there remain major gaps in assessment and management. Children do not receive uniform assessments, and care is fragmented with children in some parts of Australia receiving much poorer services than those in other areas. There is a major impact on families - with inadequate information provision, lack of support and little attention paid to carer mental health.
The Centre of Research Excellence in Cerebral Palsy (CRE-CP) is a five-year NHMRC funded project that aims to improve the physical, mental, social and emotional health and wellbeing of children with cerebral palsy and their families in Australia. While the main focus of the CRE-CP will be children, the CRE-CP will also lay the groundwork for adult-focussed research.
The CRE-CP will undertake a research program with the dual goals of improving the surveillance of all children with cerebral palsy across the country, and increasing evidence about the effectiveness of various interventions. Improvements in quality of life, participation and cost-effectiveness for the child and their family will be considered in all research studies, in addition to functional outcomes.
The CRE-CP is always seeking input from people who have been affected by cerebral palsy in the past, and who may wish to draw on their knowledge and experience to contribute to research studies.
For further information about the CRE-CP or to find out how to get involved, please visit the website at www.cre-cp.org.au
The Centre of Research Excellence in Cerebral Palsy is funded by the National Health and Medical Research Council.
The CRE-CP is a collaboration between key researchers and clinicians from the following institutions:
- Murdoch Childrens Research Institute
- Royal Children’s Hospital
- The Jack Brockhoff Child Health and Wellbeing Program at the University of Melbourne
- School of Allied Health, Australian Catholic University
- University of Sydney
- University of Notre Dame
- Cerebral Palsy Alliance Research Institute
- Telethon Kids Institute
- Deakin Health Economics, Deakin University
- Government of Western Australia, Dept of Health, Child and Adolescent Health Service
- CanChild Centre for Disability Research
- University of Salford
- National Disability Insurance Scheme
Do upper limb orthoses prevent or reduce the development of hand or wrist contractures?
This study aims to evaluate the medium to long-term use of rigid wrist/hand orthoses in children with cerebral palsy. Specifically it will investigate whether the use of orthoses can prevent or reduce musculoskeletal impairment in the wrist, fingers and/or thumb including muscle tone and loss of range of movement, compared to usual evidence-informed occupational therapy alone. The study will evaluate outcomes across a three year period.
Implementation of a formal, state-wide hip surveillance program for children with cerebral palsy
The CRE-CP will develop and implement a framework for hip surveillance for all Victorian children with cerebral palsy. This framework will include protocols and procedures to enable routine hip surveillance, will implement mechanisms to remind families and health professionals when x-rays are due, and identify avenues for follow-up when children do not receive surveillance in a timely manner. This project aims to develop processes that are efficient, sustainable and well-accepted by both families and health professionals.
A randomised controlled trial evaluating soft tissue surgery versus bony surgery in the management of displaced hips
This study, led by Professor Kerr Graham at the Royal Children's Hospital Melbourne, aims to find out whether muscle surgery or bony surgery is more successful for improving hip displacement in young children with cerebral palsy. Hip displacement can lead to changes in shape of the ball and socket, degeneration of the joint, loss of function and eventual pain. This study will compare the effects of soft tissue release with bony reconstructive surgery.
A research program on managing dyskinesia in children with cerebral palsy
The aim of this program is to develop consensus and clinical guidelines for best practice identification, assessment and management for children with cerebral palsy who have dyskinesia. The program will involve a number of projects that focus on accurate identification of dyskinesia, best measurement practices and general management principles and directions for future intervention trials.
- Development of new clinical quality of life measurement tools; for children and for parents or carers
- Improve outcomes and support available for parents and carers of children with disability
- Young adult research program designed to help adolescents achieve their personal and community aspirations
- Studies evaluating the effectiveness of common treatments for saliva control problems
The CRE-CP will develop a range of educational resources over the next five years. These will be tailored to provide relevant information and distributed widely.
For further resources and to be kept up to date with new releases, please visit the website at www.cre-cp.org.au
The CRE-CP hosts a biennial symposium in various cities across Australia, to disseminate up to date information related to the care of children with cerebral palsy. Click here for further information about the symposium.
CP FACTS provides up to date information to families about a range of topics related to cerebral palsy. Children are looked after and have activities to participate in. This annual event is held in Melbourne with plans to extend to other cities. Click here for more information about CP FACTS.