Epidemiology

Unearthing trends, prevalence and causes of cerebral palsy
Epidemiology literally translates to “the study of people”.

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

Join our mission

Help transform lives by supporting cerebral palsy research. Your donation brings hope and progress to those in need.

The Epidemiology team

Dr Sarah McIntyre

Dr Sarah McIntyre

Senior Research Fellow and Program Lead, Epidemiology
Emma Waight

Emma Waight

Senior Research Assistant
Georgie Henry

Georgina Henry

Research Assistant
Hayley Smithers-Sheedy

Dr Hayley Smithers-Sheedy

Senior Research Fellow
Kath Swinburn

Kath Swinburn

Research Officer and Governance Manager
Natasha Garrity smiling to camera

Natasha Garrity

Research Assistant
Shona Goldsmith

Dr Shona Goldsmith

Research Fellow
Headshot of Sophie Marmont

Sophie Marmont

CP Quest Coordinator
Tasneem Karim

Dr Tasneem Karim

Research Fellow
Yana Wilson

Yana Wilson

Research Officer

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.

CP Register Australia logo
  • 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.

CP Register New South Wales and Australia Capital Territory
  • Genomics:We investigate genetic variation that contributes to cerebral palsy and other neurodevelopmental disorders, including in families with siblings with different conditions. We are also founding members of the International Cerebral Palsy Genomics Consortium (ICPGC). As part of this work we lead the CP Commons, a global database for researcher and clinicians to share de-identified genetic data.

    To find out more, please head to the ICPGC website: www.icpgc.org, or contact Yana Wilson at ywilson@cerebralpalsy.org.au.
International CP Genomics Consortium
  • Cytomegalovirus and infections: We are interested in understanding the occurrence, nature, and impact of infections that cause cerebral palsy and neurodevelopmental disability. Understanding these mechanisms provides important opportunities for prevention. A priority area for our team is congenital cytomegalovirus (CMV). Working with colleagues and families with lived experience, we are working to ensure health professionals and families are aware of how they can reduce their risk of infection in pregnancy.

    To find out more, head over to our CMV Resources Hub: https://cerebralpalsy.org.au/our-research/research-projects-priorities/cmv/cmv-resource-hub/, or contact Dr Hayley Smithers-Sheedy at hsmitherssheedy@cerebralpalsy.org.au.
cCMV Register logo
  • Post-neonatal cerebral palsy: The prevalence trends and aetiological factors of post-neonatally acquired cerebral palsy are being investigated to identify risk factors and prevention strategies.

    To find out more, please contact Emma Waight at Emma.Waight@cerebralpalsy.org.au.
  • Visualising pathways to cerebral palsy: Along with an international team, we’re developing an overarching visual illustration of the complex network of causes of cerebral palsy. This uses a graphical model called a ‘Directed Acyclic Graph’. The CP-DAG will facilitate scientific discovery, communication, and prioritisation of research both within our team and worldwide.

    To find out more, please contact Dr Sarah McIntyre at smcintyre@cerebralpalsy.org.au.
  • Other specific causal pathways:With collaborators we are understanding more about Assistive Reproductive Technology (Dr Michele Hansen TKI); Hypoxic Ischaemic Encephalopathy; and led by Dr Emily Shepherd (UofA) we have a body of research aimed to ensure eligible premature babies receive magnesium sulphate for neuroprotection.
  • Mindfulness: Mindfulness Based Stress Reduction (MBSR) has been shown to support improvements in stress and anxiety across a range of populations. This suite of work is focussed on development of a modified MBSR telehealth program for adults with cerebral palsy. We have completed an RCT of a telehealth intervention, and are now exploring how participants’ experiences of the program can help to inform future implementation.

    To find out more, please contact Dr Hayley Smithers-Sheedy: hsmitherssheedy@cerebralpalsy.org.au 

  • Health Services: We use the NSW/ACT CP Register to help with health service utilisation research. Key collaborators such as Dr Simon Paget are leading research to understand outpatient attendance complexities and telehealth to improve health outcomes. We are also working with Tan Martin to better understand where children with CP live across rural and remote NSW/ACT to improve families’ access to heath and disability services.

    To find out more, please contact Dr Sarah McIntyre: smcintyre@cerebralpalsy.org.au.

  • Research priorities: Our research areas are guided by what is important to people with CP and their families. In 2018, our team asked people with cerebral palsy and families to identify their research priorities. This built on our earlier research priorities Delphi study, conducted in 2009. This work is ongoing.
  • CMV Australia: Our team works with research partners from CMV Australia (Family Advocacy) to guide our CMV research, education and awareness activities. We are also fortunate to work with Mrs Pam Rogers who is a CP Quest research partner with lived experience of CMV and CP who is guiding our work.

    To find out more, please head to the CMV Australia website: https://www.cmv.org.au.
CMV Australia logo
  • Genetics Community Reference Group: The purpose of this Reference Group, which is open to interested members of the CP community, is to ensure that people with lived experience help shape the future of both clinical and research uses of genetic technologies in people with CP. Members will help identify barriers and major concerns from the use of this technology, how their data may be used in future research and clinical applications. Members will also assist to co-develop education materials to build awareness, and advocate for equitable access to these services for people with CP.

    To find out more, please contact Tash Garrity at ngarrity@cerebralpalsy.org.au

What we're working on: