It is the branch of medicine and research that studies and analyses the incidence, distribution and causes of a condition in a population. In analysing large sets of data on the prevalence and severity of cerebral palsy, our Epidemiology team report changes in prevalence across Australia to unearth vital insights about how to prevent cerebral palsy.
CPA oversees the largest, most extensive whole-country registry of cerebral palsy data in the world through the Australian CP Registry. Our Epidemiology team are committed to supporting other countries to unlock the power of big data and actively supports registers in a dozen countries.
Our epidemiology program also conducts ground-breaking work on the causes of cerebral palsy, including understanding the role of genetics, congenital anomalies and prevention of viral infections such as CMV.
One in 700 children in Australia are born with CP, a sustained decrease of around 40% from a generation ago, when one in 400 children were born with CP
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Sarah leads the Epidemiology theme and is involved in strategic planning for the Research Institute. She works with teams on CP Registers identifying: rates and trends, aetiology, prevention strategies and equitable access to health and disability services.
Emma is a part of the Epidemiology theme and works on the Australian Cerebral Palsy Register and Australasian Congenital Cytomegalovirus Register, amongst other projects. Her primary role is to investigate the trends in prevalence and aetiological risk factors of cerebral palsy, along with identifying prevention opportunities and priority populations.
Responsible for NSW/ACT CP Register data management and providing project support across the Institute.
Hayley leads and manages epidemiology and public research studies to identify trends in cerebral palsy and opportunities to reduce the prevalence and severity of disability.
Responsibilities include preparation and coordination of research documentation and ethics applications, conducting data collection and analysis, performing literature reviews and reporting findings.
Data entry and Admin I am currently curating the weekly internal newsletter and a summary of genetic findings presentation for 2024. I also help with ENH data entry.
Shona’s role involves leadership and collaboration on population-based epidemiological research, focussing on the aetiology and prevention of cerebral palsy. Shona is also the Research Co-Lead of CP Quest, our partnership between people with lived experience and researchers, and leads the ACT Cerebral Palsy Register.
Over sees a group of research partners with lived experience of Cerebral Palsy (CP). This also involves supporting the involvement, resource development and support this community.
What we're working on
The Epidemiology team work with clinicians, researchers and people with CP and their families around the world to: report trends, identify causes and prevention strategies and improve health and wellbeing.
Australian CP Register: The Australian CP Register (ACPR) is a confidential research database of clinical information about people with cerebral palsy. The main aims of the CP Register are to monitor and report the changing rates of cerebral palsy, gain further understanding about the causes of cerebral palsy, evaluate preventive strategies, and assist in planning services for children and adults who have cerebral palsy.
You can read our most recent register report here: https://cpregister.com/publications-and-other-resources/.
To find out more, please head to our website: https://cpregister.com/, or contact us at cpregister@cerebralpalsy.org.au.
NSW/ACT CP Register: The NSW/ACT Cerebral Palsy Register aims to include all people with cerebral palsy born or living in NSW/ACT. This data is regularly uploaded to the ACPR and is used for data linkage purposes. This enables powerful epidemiological research to understand trends, causes of cerebral palsy and service requirements. We have an advisory group and stay in regular contact with families and people with CP on the Register, distributing newsletters and invitations to participate in research studies. We welcome input from families and people with CP about the NSW/ACT CP Register.
To find out more, please head to our website: https://cpregister.com/, or contact us at cpregister@cerebralpalsy.org.au.
Led by Tan Martin, a proud Ngemba woman and Researcher, this first piece of research has shown that the birth prevalence of cerebral palsy amongst Aboriginal and Torres Strait Islanders has fallen in the last decade. Tan continues with this work to better understand how cerebral palsy impacts Aboriginal and Torres Strait Islander children and families.
To find out more, please read our news story here: https://cerebralpalsy.org.au/news-stories/landmark-study-establishes-prevalence-of-cerebral-palsy-for-aboriginal-and-torres-strait-islander-children/
To find out more, please contact Dr Hayley Smithers-Sheedy: hsmitherssheedy@cerebralpalsy.org.au
To find out more, please contact Dr Sarah McIntyre: smcintyre@cerebralpalsy.org.au.
What we're working on:
