Cerebral Palsy Alliance Research Foundation
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CP Registers & Collaborative Networks

Summary

Current Projects

  • Australian Cerebral Palsy Register
  • NSW/ACT Cerebral Palsy Register
  • Establishment of CP Registers in Other Countries
  • 2nd International Survey of CP Registers and surveillance programs
  • Data Linkage: Health and educational outcomes of high risk newborn infants
  • IMPACT for CP: International Multidisciplinary Prevention And Cure Team for Cerebral Palsy

Completed projects

  • What constitutes cerebral palsy in the twenty-first century?
  • 1st International Survey of World CP Registers and surveillance programs

Current Projects


Australian Cerebral Palsy Register

The Australian Cerebral Palsy Register Group: Nadia Badawi (Cerebral Palsy Alliance, NSW), Eve Blair (Telethon Institute, WA), Michael DeLacy (CP League of Qld), Keith Edwards (Centre for Disease Control, NT), Catherine Gibson (Children, Youth and Women’s Health Service, SA), Noula Gibson (Telethon Institute, WA), Shona Goldsmith (Cerebral Palsy Alliance, NSW), Christalla Louca (CP League of Qld), Sarah Love (Telethon Institute, WA), Eliza Maloney (Royal Hobart Hospital, Tas), Sarah McIntyre (Cerebral Palsy Alliance, NSW), Elaine Meehan (Royal Children’s Hospital & MCRI, Vic), Iona Novak (Cerebral Palsy Alliance, NSW), Dinah Reddihough (Royal Children’s Hospital & MCRI, Vic), Sue Reid (Royal Children’s Hospital & MCRI, Vic), Heather Scott (Children, Youth and Women’s Health Service, SA), Robyn Sheppard (St Giles, Tas), Hayley Smithers-Sheedy (Cerebral Palsy Alliance, NSW), Linda Watson (Telethon Institute, WA).

The purpose of this project is to host and maintain an Australian-wide cerebral palsy population register known as the Australian Cerebral Palsy Register (ACPR). This register collects data from each of the state and territory registers on the incidence and prevalence of cerebral palsy . The Australian-wide register will supply data to researchers to investigate the cause and prevention of cerebral palsy; and enable service providers to plan for the present and future service provision needs of people with cerebral palsy.

View the ACPR reports.

Australian Cerebral Palsy Register Group (2013). Australian Cerebral Palsy Register Report: birth years 1993-2006. Sydney, Cerebral Palsy Alliance Research Institute.

Australian Cerebral Palsy Register Group (2009). Report of the Australian Cerebral Palsy Register, Birth Years 1993-2003. Sydney, Cerebral Palsy Alliance Research Institute.

In 2015, the findings from the Australian Cerebral Palsy Register will be published in a Supplement issue of the high-impact journal Developmental Medicine and Child Neurology. Also in 2015, we are working on the next ACPR report.


NSW/ACT Cerebral Palsy Register

Cerebral Palsy Alliance Investigators: Sarah McIntyre, Hayley Smithers-Sheedy, Shona Goldsmith, Isabelle Balde, Iona Novak, Nadia BadawiThe CP Register is a confidential research database of information about people with cerebral palsy in NSW and the ACT. The main aims of the CP Register are to monitor incidence and prevalence 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.
https://www.cpregister.com/


Establishment of CP Registers in Other Countries

Cerebral Palsy Alliance Investigator: Hayley Smithers-Sheedy

Cerebral Palsy Alliance has experience in the development of CP Registers and is able to use the current Australian CP Register IT platform as a basis from which to support other countries in the establishment and maintenance of their CP Registers. By working together we can also ensure the inclusion of common data items across registers to better support data sharing and other collaborative research efforts.

This is exemplified by our collaborations with colleagues from:

New Zealand at the Starship Children’s Hospital to establish the NZ CP Register

Bangladesh at the Child Sight Foundation to establish the Bangladesh CP Register


2nd International Survey of CP Registers and surveillance programs

Cerebral Palsy Alliance Investigators: Shona Goldsmith, Sarah McIntyre, Hayley Smithers-Sheedy
Co-Investigators: Christine Cans (Surveillance of CP Europe), Eve Blair (Telethon Kids), Linda Watson (Telethon Kids), Marshalyn Yeargin-Allsop (Centres for Disease Control and Prevention, USA)

This survey will update and extend the first International CP Register and Surveillance Program survey, conducted by our team in 2008.

There are now approximately 40 cerebral palsy registers and surveillance programs operating around the world. As such, there is enormous potential for collaborative projects between the registers. Collaboration is particularly important for research questions where individual registers do not have a sufficient number of cases for meaningful research.

The survey will identify the many similarities and differences between the registers, in particular their aims, methods, and data items collected. Preliminary results were disseminated at a Register workshop at the American Academy of Cerebral Palsy and Developmental Medicine conference in San Diego, September 2014.

Publication: An article has been submitted to Developmental Medicine and Child Neurology and is currently under review. The full survey report has been drafted and is under author review.

Data Linkage: Health and educational outcomes of high risk newborn infants

Cerebral Palsy Alliance Investigators: Sarah McIntyre, Nadia Badawi

Co-Investigators: Ju Lee Oei (Royal Hospital for Women), Louisa Carroll (University of NSW), Barbara Bajuk (NSW Pregnancy and Newborn Services Network), Mohamed Abdel-Latif (Canberra Hospital)

This data linkage project will: 1) identify and quantify risk factors associated with poor educational outcomes of “high risk” children (including those at high risk of cerebral palsy), born 1994-2008 in NSW, Australia; 2) develop an ongoing model of educational assessment for NICU survivors until adulthood; 3) determine the impact of cancer on the survival and education of “high risk” children; and 4) determine whether rates of premature CP (<30 weeks) are decreasing despite increasing survival. This project includes data linkage with NAPLAN educational assessments.


IMPACT for CP: International Multidisciplinary Prevention And Cure Team for Cerebral Palsy

Cerebral Palsy Alliance Investigators: Karen Walker, Nadia Badawi, Iona Novak, Sarah McIntyre, Cathy Morgan
Co-Investigators: Jim Blackman (Cerebral Palsy International Research Foundation), Janice Brunstrom-Hernandez (St Louis Hospital), Linda S. de Vries (Wilhelmina Children’s Hospital), Donna Ferriero (UCSF Benioff Children’s Hospital)

IMPACT for CP is an international research network whose objective is to promote and support high quality research in the prevention and cure of cerebral palsy, and improve outcomes for those with the condition. IMPACT for CP is an open collaboration of scientists, researchers, clinicians and families committed to this mission.

IMPACT for CP highlights include:

A website to provide up-to-date information on our activities: impact.cerebralpalsy.org.au

The Balnaves Curative CP Research Program focussed on addressing the pressing need to establish a coordinated and targeted research approach to identify cerebral palsy early, and to enrol newly diagnosed infants in trials aimed at lessening severity of injury and maximising brain repair.

Three summits have been held to bring together a selection of the world’s leading researchers to initiate an international collaborative network seeking to prevent and cure cerebral palsy. The three summits were sponsored by the Balnaves Foundation.

Summit 1: The Prevention and Cure Cerebral Palsy Summit was held on 18-19 October 2011 in San Francisco, USA.

Summit 2: The Neonatal Encephalopathy and Hypoxic Ischemic Encephalopathy Summit was held on 8-9 May 2013 in Maryland, USA.

Summit 3: The Early Identification and Early Neurorehabilitation in CP Summit was held on 1-2 July 2014 in Vienna, Austria.

An International Clinical Guideline for Early Identification is being developed as a result of the Vienna Summit (July 2014), and a follow-up workshop was held in Pisa, Italy (May 2015).

The next summits will focus on stem cells (November 2015) and neonatal stroke (February 2016).

A neonatal neurology update was held at the Children’s Hospital at Westmead, Sydney, which was well attended with over 160 participants (February 2015). The next update will be in August 2015.

We brought 75 clinicians from around the country and internationally to train in the General Movements Assessment (February 2015).

We held a PSANZ breakfast session on IMPACT for CP, bringing researchers together in Melbourne (April 2015).


Completed Projects

What constitutes cerebral palsy in the 21st century?

Primary investigators: Hayley Smithers-Sheedy (Cerebral Palsy Alliance), Nadia Badawi (Cerebral Palsy Alliance), Eve Blair (Telethon Institute for Child Health), Christine Cans (Grenoble Universite, France), Kate Himmelmann University of Gothenburg, Sweden)  Ingeborh Krägelog-Mann (University Children’s Hospital, Germany),, Sarah McIntyre (Cerebral Palsy Alliance), Jennie Slee (Genetic Services WA),  Peter Uldall (Copenhagen University, Denmark),  Linda Watson (Telethon Institute for Child Health; Dept Health WA), Meredith Wilson (Children’s Hospital at Westmead; University of Sydney).

To monitor trends in the prevalence of cerebral palsy, consistent inclusion and exclusion criteria for CP are essential. Consensus in criteria provides opportunities to:

  • pool data across registers
  • increase statistical power for research
  • monitor and compare trends over time between and across regions
  • evaluate new population level interventions such as magnesium sulphate and cooling
  • use registers as a population sampling frame for multi-centre trials.

The aim of this project was to define inclusion/exclusion criteria that have been adopted uniformly by surveillance programs and identify where consensus is still elusive. The project also aimed to provide an updated list of the consensus concerning cerebral palsy inclusion/exclusion when a syndrome/disorder is diagnosed.

To achieve these aims, data were drawn from an international survey of CP registers, the NSW CP Register (1993 2003), Western Australian CP Register (1975 2008), and Surveillance of CP in Europe (SCPE) (1976–1998). An expert panel of clinicians and researchers used a consensus building technique, the SCPE ‘decision tree’ and the original ‘What constitutes cerebral palsy?’ paper as frameworks.

Smithers-Sheedy, H., N. Badawi, E. Blair, C. Cans, K. Himmelmann, I. Krageloh-Mann, S. McIntyre, J. Slee, P. Uldall, L. Watson and M. Wilson (2014). “What constitutes cerebral palsy in the twenty-first century?” Dev Med Child Neurol 56(4): 323-328.

Further information is available from Appendix S1: https://www.cpregister.com/


1st International Survey of World CP Registers and surveillance programs

Primary investigators: Shona Goldsmith (Cerebral Palsy Alliance), Sarah McIntyre (Cerebral Palsy Alliance), Hayley Smithers-Sheedy (Cerebral Palsy Alliance), Christine Cans (Surveillance of CP Europe), Eve Blair (Telethon Kids), Linda Watson (Telethon Kids), Marshalyn Yeargin-Allsop (Centres for Disease Control and Prevention)

A survey was developed and sent to all the registers or surveillance groups known by the authors at this time in preparation for the World CP Register Congress held on 19 February 2009as part of the International Cerebral Palsy Conference in Sydney. Read a summary of the CP Registers and Surveillance Survey forms.