Report period: 1 June 2022 – 31 January 2024
Research update
This research aims to help people with cerebral palsy get a better understanding of their cognitive or thinking styles and how these may relate to quality of life and number of falls. Thus far, we have developed a research protocol that helps us understand our participants’ cognitive and motor profile. This has been approved by the ethics committee of the University of Sydney and by the Cerebral Palsy Alliance governance committee.
We are now collecting data that will help us understand if there are differences between people with cerebral palsy and those without. This information could assist us to develop programs that can improve the quality of life of people with cerebral palsy.
Measure of impact
It is expected that this research program will have short- and long-term benefits for people with CP but also the wider community including family and friends and the research community.
Short term benefits:
● People with CP participating in the study will receive a summary report that describes their cognitive profile. This report can assist the participant seek support from allied health and other services tailored to their individual needs.
● Researchers can use this information to help them understand what new research is needed to further assist people with CP.
Longer term benefits:
This research can contribute to the development of training (cognitive remediation) programs that may lead to improvements in cognitive/executive function.
If our research shows a relationship between executive and motor function, future training (cognitive remediation) programs may help improve gait and balance and help people have a better quality of life and reduced number of falls.
Beneficiaries
This research aims to primarily benefit individuals with cerebral palsy by understanding the relationship between executive and motor cognitive processes and association with quality-of-life outcomes including number of falls. The primary research benefit for individuals with cerebral palsy will be a report of their executive and motor function profile.
This will be presented in the format that best meets their needs in consultation with end users. In addition, research data will be available to other researchers through submission to an open research data repository. This will facilitate where feasible further research in combined larger samples and promote interest in next-users for research translation in cognitive remediation and training programmes.
Research findings will be reported to the research and cerebral palsy community through publication in an open access journal and public forums including community websites such as The Conversation. End-users involved in providing services to people with CP will be further engaged by dissemination of summary results through their representative organisations.
Research Progress
In addition to obtaining ethics approval from the University of Sydney ethics committee and Governance approval from Cerebral Palsy Alliance to recruit participants through CPA, the project was presented to a community consultation committee comprised of people with neurodevelopmental conditions. Feedback from these three committees has been incorporated into the project’s protocol and objectives.
A research assistant was hired to assist with the project, and pilot testing was conducted. The CI also completed training in the use and interpretation of data obtained from a gait mat system, and in the translation of research outcomes to clinical use and practice.
The CIA is currently recruiting and testing participants to identify their executive and motor function profiles. The collected data will enable the CIA and associate investigators to evaluate the contribution of executive and motor function profiles to quality-of-life outcomes. Hypothesis testing will be completed once all data has been collected.
Timeline update
As ethics and governance approvals took longer than anticipated, the expected project completion date is now December 2024. To come
● Completion of recruitment of study participants
● Statistical analysis and interpretation of cognitive and motor profiles
● Feedback report of cognitive profile to study participants
● Dissemination of results across the different stakeholder groups
Thank you
Sincere thanks to The Co-Group for supporting this project for the benefit of people with cerebral palsy. Your generous contributions to improving the lives of people with disabilities are deeply appreciated. We look forward to providing a final report at the completion of this project, in January 2025.
Prepared by: Shannon Taylor, Relationship Manager, Trusts and Foundations
