Overview

Founded in 1987, the VCPR project involves the collection of health information on people with cerebral palsy who were born, had lived, or had received health services in Victoria from 1970 onwards.

At the start of 2022, over 6,200 people had been registered, making the VCPR one of the largest cerebral palsy registers in the world.

Our purpose

The purpose of the VCPR project is to ensure a sustainable, high-quality, population-based register of Victorians with cerebral palsy and to use this information to contribute to the creation and sharing of knowledge about cerebral palsy in Victoria, nationally, and internationally.

Project details

The VCPR team primarily identifies new cases of cerebral palsy via children’s engagement with The Royal Children’s Hospital, Monash Children’s Hospital, or the Victorian Paediatric Rehabilitation Service. After confirming eligibility and obtaining consent from families, we collect demographic, causal, and clinical information on each child from the relevant electronic medical records.

This information forms the basis for our epidemiological and causal research program. In addition, we contribute data to the Australian Cerebral Palsy Register and collaborate on national and international epidemiological projects. The VCPR is also frequently used as a platform to facilitate other cerebral palsy research.

More resources

•  Australian Cerebral Palsy Register website

Information for participants

What does involvement mean?

Involvement of families is greatly valued by VCPR staff and researchers. Families of eligible children are contacted about the project and consent is provided on an opt out basis.

Unless families or individuals with cerebral palsy choose not to be contacted about research opportunities, they may also receive invitations from time to time to participate in suitable projects about cerebral palsy.

Why is participation important?

We are grateful to each participant in the VCPR project. Collection of information about all Victorians with cerebral palsy ensures that:

• Our epidemiologists can monitor Victorian trends in cerebral palsy prevalence, clinical profile, and survival, thereby providing important supportive evidence for the impact of changes in society, pregnancy and delivery, and management of sick newborns.
• Victoria continues to contribute 25% data to the Australian Cerebral Palsy Register. This large national dataset is used for regular epidemiology reports and for research, conference presentations, and peer-reviewed publications about cerebral palsy in Australia and internationally.
• Birth information, genetic test results, brain scans, and clinical data are used to identify the likely causal pathway for each child with cerebral palsy and, consequently, the contribution of various causal pathways and risk factors to the development of cerebral palsy in the Victorian population.
• The VCPR continues to provide substantial support for many other research projects and higher degree students.
• We will use our population dataset to ensure all children in Victoria are appropriately engaged with surveillance programs aimed at preventing secondary impairments such as hip displacement.

How is participant privacy protected?

The Victorian Cerebral Palsy Register fulfils state privacy legislation and is governed by the Human Research Ethics Committee of the Royal Children’s Hospital, Melbourne. Under this ethics oversight, we will never provide a person outside the VCPR team with information about participants without first seeking the consent of the participant or family.

How do we keep in touch?

Periodic newsletters from the VCPR help keep participants abreast of the latest news.

Research team

Collaborators

We are very grateful for the support provided to the VCPR by our key partners, funders, and supporters.

A key VCPR collaborator is the Australian Cerebral Palsy Register group.

Funding

• Victorian Department of Health
• The Lorenzo and Pamela Galli Research Trust
• The Royal Children’s Hospital Research Foundation
• The Cerebral Palsy Alliance Research Foundation

Research outputs

At the end of 2021, VCPR data had been used to support:

• 141 research studies
• 156 peer-reviewed publications
• 15 reports, book chapters, and letters
• 50 higher degree students