The Victorian Cerebral Palsy Register (VCPR)

The Victorian Cerebral Palsy Register (VCPR) collects information about people with cerebral palsy born since 1970. The Victorian Register is one of the largest single cerebral palsy registers in the world (with ~100 new cases added yearly) and this places it in a unique position to contribute to what is known about cerebral palsy worldwide. The ultimate goal of this project is to advance our knowledge in an effort to provide better help and support for everyone with cerebral palsy, their families and the community in which they live.
VCPR aims to describe trends in the prevalence and clinical profile of cerebral palsy; investigate causal pathways and identify potential avenues for prevention or amelioration of the condition.

Study Summary
Study name The Victorian Cerebral Palsy Register
Study abbreviation VCPR
Current principal investigator/s Dinah Reddihough
Current project manager

Sue Reid

Primary Institution/s Murdoch Children’s Research Institute - MCRI
Collaborating Institution/s The Royal Children’s Hospital - RCH
Monash Children’s Hospital
Mercy Hospital for Women
Royal Women’s Hospital
Major funding source/s Victorian Department of Health and Human Services
The Royal Children’s Hospital Foundation - RCHF
Study website https://www.mcri.edu.au/research/projects/victorian-cerebral-palsy-register
Study focus

The main aims of the VCPR are as follows:
1. To describe trends in the prevalence and clinical profile of cerebral palsy;
2. To investigate causal pathways and identify potential avenues for prevention or amelioration of the condition;
3. To identify specific groups of children/adults for further research;
4. To contribute to other Australian and international datasets on cerebral palsy.

Sampling frame

Individuals who were born or have lived in Victoria, with a date of birth on or after 1st January 1970, whose condition fits the definition for cerebral palsy i.e. a motor problem due to a lesion in the immature brain, which persists until after the age of 5 years and is non-progressive. The brain injury/abnormality must have occurred before the age of 2 years.

Primary study type Register
Primary participant (at recruitment) Index child
Year commenced

1987

Is this study ongoing? Yes - the study is ongoing
Ongoing recruitment? Yes
Sample size (N)

5900 cases as of June 2019

Survey data available? No
Imaging data available? Yes
Linkage to administrative dataset/s? Yes, linkage to (at least one) administrative dataset completed
Biosamples available? No
Are data available to others outside study team, with appropriate safeguards and structures in line with the cohort’s ethics and governance processes? Yes
Are there any costs associated with data/sample access for approved requests? There may be costs associated with access, evaluated on a case by case basis
Broadest type of participant consent available Extended consent (can be used for future ethically approved research related to this project)
Study Contacts
Principal investigator/s Dinah Reddihough
Project manager

Sue Reid

Study Contact

Email: vic.cpregister@rch.org.au
Address: Neurodisability and Rehabilitation Research
Murdoch Children's Research Institute,
Royal Children’s Hospital
Flemington Road, Parkville
Victoria 3052 Australia