Victorian Cerebral Palsy Register (VCPR)
The Victorian Cerebral Palsy Register (VCPR) collects information about people with cerebral palsy born since 1970. Information collected covers seven broad areas: demographics, perinatal data, birth defects, aetiology and contributing factors, brain imaging, nature and severity of the motor disorder, co-impairments, and procedures. The Register is extremely important in enabling us to determine how the incidence of cerebral palsy has been changing over time in the state of Victoria. Research conducted through the Murdoch Childrens Research Institute also allows us to better understand any trends in the type and severity of the movement disorder in cerebral palsy, and to advance our knowledge of the multitude of factors that appear to increase the risk of cerebral palsy.
The Victorian Register is one of the largest single cerebral palsy registers in the world (with 5,366 registered cases as of January 2016 and ~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.
The main aims of the VCPR are: to describe trends in the prevalence and clinical profile of cerebral palsy; to investigate causal pathways and identify potential avenues for prevention or amelioration of the condition; to identify specific groups of children/adults for further research; and to contribute to other Australian and international datasets on cerebral palsy. The VCPR has been used extensively by external researchers, both as a source of participants for various studies and as a source of population-based data on cerebral palsy.
|Study name||Victorian Cerebral Palsy Register|
|Current principal investigator/s||Professor Dinah Reddihough|
|Current project manager||Dr Sue Reid|
|Cohort representative (study contact)||Dr Sue Reid / Ms Elaine Meehan|
|Postal address||Developmental Disability and Rehabilitation Research, Murdoch Childrens Research Institute, The Royal Children’s Hospital, 50 Flemington Road Parkville, Vic 3052, Australia|
|Phone||+61 3 9345 4807|
|Primary Institution||Murdoch Childrens Research Institute|
|Collaborating Institution/s||Royal Children’s Hospital; Melbourne & Monash Children’s Hospital|
|Major funding sources||Victorian Department of Health and Human Services; Victorian Medical Insurance Agency Inc.|
|Are data available outside study team?||Yes, data are available to others outside the study team, and the VCPR has been used extensively by external researchers, both as a source of participants for various studies and as a source of population-based data on cerebral palsy. The VCPR manager is responsible for approving access to, and use of, VCPR data. Individuals requesting assistance from the VCPR are required to complete a form outlining details of their request and the proposed involvement of the VCPR. In exercising the power to release VCPR data to other bodies or persons, the data custodian will take into account a range of considerations, including scientific quality of the study, feasibility, quality of VCPR data, and available resources. Applicants must obtain approval from a Human Research Ethics Committee when 1) the project requires access to individual case data, 2) researchers are recruiting study participants, or 3) there is an intention to publish or otherwise disseminate the study results. The VCPR manager will use his/her discretion to determine whether ethical approval is required for provision of aggregated background information on cerebral palsy.|
|Study focus||The main aims of the VCPR are as follows:
|Sampling frame||Individuals who were born or have lived in Victoria, Australia, 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.|
|Year commenced||The VCPR commenced in 1987, but individuals born from 1970 onwards are included in the dataset.|
|Commencement sample||Total number of registered cases as of January 2016 = 5,366|
|Imaging||Structural brain MRI, CT
|Linkage||Perinatal data: Link to the Victorian Perinatal Data Collection Unit
Health services: Link to the Victorian Admitted Episodes Dataset and the Victorian Emergency Minimum Dataset
Deaths:Link to the National Death Index
Options to link with other datasets are considered on a study-by-study basis.
|Biosamples?||Not routinely collected. Collected as part of specific studies that recruit participants from the VCPR.|
|Ethics approvals or requirements?||
The VCPR has been approved by the Human Research Ethics Committees of The Royal Children’s Hospital, Melbourne and Monash Health. The VCPR has a waiver of consent to collect a minimum dataset on all identified cases of cerebral palsy. Following identification of a case, parents/carers are sent a letter informing them that their child’s details are on the VCPR, following which they can opt out of a) additional data (e.g. perinatal, demographic, clinical, imaging etc.) being kept on the VCPR and/or b) being contacted by VCPR staff about participating in various research studies.
Researchers must obtain approval from a Human Research Ethics Committee when 1) the project requires access to individual case data from the VCPR, 2) researchers are recruiting study participants from the VCPR, or 3) there is an intention to publish or otherwise disseminate the study results. Many studies that use VCPR data, but do not involve contact with participants, receive approval for a waiver of consent.
|Wave||Year||Age (mean, range)||Eligible sample|
|1||Birth years: 1970 – present||0-46 years||Total number of cases as of January 2016 = 5,366|