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CP-Achieve

Our CRE, the “Australian Centre for Health, Independence, Economic Participation and Value Enhanced Care for adolescents and young adults with cerebral palsy“ (CP-Achieve) will, for the first time, address the health and social inequities of adolescents and young adults (10-30 years) with cerebral palsy (CP) – a growing population known to be significantly disadvantaged.

Compared to able-bodied peers, they have poorer physical and mental health, inadequate access to health care and significantly reduced social and economic participation.Our vision is an Australia where people with CP receive the best health care throughout their lives – not just in childhood – and live in, and contribute to, supportive communities that enable their participation. CP-Achieve proposes to foster health care access and promote healthy lifestyle interventions to improve community participation.

Two overarching aims will guide the research program to improve physical and mental health, and to build supportive family, community and health service environments. Health economics, consumer engagement, promotion of participation, and development of a specialist workforce will underpin all our work.

The outcomes of CP-Achieve will be to establish rigorous population-based data about the scope of health and participation problems, best practices and guidelines for health and disability service providers, means to empower adolescents and young adults with CP to use health and community services, and models of cost-effectiveness to inform policy and practice, and drive value-enhanced care.

If you would like more information please contact CP-Achieve Coordinator Kari Klein at kari.klein@mcri.edu.au and share this email with your network for those who may be interested in being involved.

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1) Use the QR code on the right side of the page.

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2) Type the following link into a web browser: https://tinyurl.com/CPAchWel

Please email cp-achieve@mcri.edu.au if you would like to enquire about any of the information above in more detail, future podcasts or about presenting, webinars, previous editions of our newsletter, or anything else.

To register your interest: CLICK HERE

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The Centre of Research Excellence in Cerebral Palsy is funded by the National Health and Medical Research Council

CP-Achieve has been established with key research leaders from our past CRE (CRE-CP, concluded Feb 2019). This CRE will focus on one of the most disadvantaged groups in our society, adolescents and young adults aged 10 – 30 years with cerebral palsy. This developmental period is critical for establishing physical and mental health foundations for adulthood, for young people to learn to manage their own health care and to transition to adult roles and opportunities.

Our multidisciplinary team, with disability, adolescent health, psychiatry, orthopaedic surgery and health economics expertise, will conduct a focussed body of research to determine and address the needs of this group, establish best methods of engagement with them and their families, determine optimal treatments, translate the evidence to the workforce, including general practitioners and allied health professionals, create recommendations for new models of care, and train an urgently needed adult health-care workforce with knowledge and skills in this area.

Based on our well-known platform of the Cerebral Palsy Registers, we will access population-based samples of adolescents and young adults, to engage them in research using a range of research methodologies including data linkage, online surveys and interviews and examinations. In conjunction with international collaborators, we will also trial new approaches to promote fitness, reduce pain and fatigue and optimise community inclusion.

Our research program will be maximised by fourembedded themes: a focus on participation, authentic engagement with consumers, detailed health economics to inform costs and cost-effectiveness, and building a skilled workforce. 

Professor Rob Carter, Deakin University
Role: 
Chief Investigator
Professor Nora Shields, La Trobe University
Role: 
Chief Investigator
Associate Professor Prue Morgan, Monash University
Role: 
Chief Investigator
Doctor Margaret Wallen, Australian Catholic University
Role: 
Chief Investigator
Doctor Ingrid Honan, University of Sydney
Role: 
Chief Investigator
Professor Bruce Bonyhady, University of Melbourne
Role: 
Associate Investigator
Doctor Anthony Carpenter, University of Melbourne
Role: 
Associate Investigator
Ms Evelyn Culnane, Royal Children's Hospital
Role: 
Associate Investigator
Associate Professor Gabrielle Drake, Western Sydney University
Role: 
Associate Investigator
Doctor Jane Tracy, Monash Health
Role: 
Associate Investigator
Professor Peter Rosenbaum, McMaster University
Role: 
Associate Investigator
Professor Jan Willem Gorter, McMaster University
Role: 
Associate Investigator
Professor Jenny Ziviani, University of Queensland
Role: 
Associate Investigator
Doctor Leanne Johnston, University of Queensland
Role: 
Associate Investigator
Professor Mats Granlund, Jönköping University
Role: 
Associate Investigator

Administering Institution: Murdoch Childrens Research Institute

Participating Institution(s):Department:
Australian Catholic University Melbourne
School of Allied Health
Australian Catholic University NSW
School of Allied Health
Deakin University
Deakin Health Economics
Jönköping University
School of Education and Communication
La Trobe University 
Department of Rehabilitation Medicine, Nutrition and Sport
McMaster University 
 Department of Paediatrics
Monash University 
Centre for Developmental Disability Health
Monash University
Department of Physiotherapy
Murdoch Childrens Research Institute
Centre for Adolescent Health
Murdoch Childrens Research Institute
Orthopaedics
Murdoch Childrens Research Institute
Neurodisability and Rehabilitation
Royal Children's Hospital
Department of Adolescent Medicine
University of Melbourne
Melbourne Disability Institute 
University of Sydney
Cerebral Palsy Alliance Research Institute
University of Queensland
School of Health and Rehabilitation Sciences
Western Sydney University 
School of Social Sciences
 
  1. Improving physical and mental health
  1. Building supportive environments

1.1.1: Estimate prevalence of physical and mental health problems; and

Victorian-based birth cohort of adults with CP follow up

1.3.1: Expanding available evidence to those with complex disability

1.1.2: Understanding health service use and outcomes

1.3.2: Adapt an evidence-based lifestyle program to Australian context

1.1.3: Determine impact on participation in education, employment & community

2.1.1: Understanding and defining supportive health/NDIS service environments

1.2.1: Long term health benefits of multi-level surgery

2.1.2: Understanding the needs and perspectives of people with CP and their families

2.2.1: Evaluate the outcomes of transition services for young people with CP

2.1.3: Creating pathways from rehabilitation to recreation

2.2.2: Evaluate impact of screening on the identification of mental health problems

2.3.1: Adapt evidence-based empowerment programs to the Australian context

Child with books
Research News
Wed 22 Jul 2015 | 02:17 PM
The Centre of Research Excellence in Cerebral Palsy aims to attract and train doctoral and postdoctoral researchers to create the next generation of highly skilled clinical researchers in cerebral palsy. There are several PhD projects currently available on dyskinesia, pain and saliva control.