CP Register and Surveillance

The Register and Surveillance cluster has been developed in response to recommendations made at the completion of the World CP Registers Surveys and Networks Day in Pisa 2012.

It is hoped this cluster will enable individuals in this field to: explore specific issues relating to CP Registers and surveillance, share expertise and generate future collaborations.

This page links to an interactive forum, which is open to any individual who has an interest and/or expertise in CP registers and surveillance “so please feel free to pass this link on to your colleagues if you think they might be interested.”

Discus this topic on the Intersect Forum.

Contacts

CP Registers/Surveillance Programs

• Australian Cerebral Palsy Register
• Individual Australian State and Territory CP Register contact details:
• New Zealand Cerebral Palsy Register
• Cerebral Palsy Research Registry (Chicago)
• Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP)
• Surveillance of Cerebral Palsy in Europe(SCPE)
• Individual CP Registers/Surveillance Programs who are SCPE partnters, contact details:

Cerebral Palsy Active Surveillance Programs

• CPUP
• CPOP Denmark
• CPOP Norway
• CP Check-Up in New South Wales and Australian Capital Territory, Australia, contact: pkarlsson@cerebralpalsy.org.au

Reports/Publications

• Australian CP Register Reports
• SCPE references/publications
• What constitutes CP in the 21st Century
• What constitutes CP in the 21st Century Appendices
• Report of the International Survey of Cerebral Palsy Registers and Surveillance System 2015
• Developmental Medicine and Child Neurology Special Issue: Cerebral Palsy in Australia, Submissions from the Australian Cerebral Palsy Register Group, 2016

Resources and workshops

AACPDM preconference workshop 2014: Cerebral palsy registers and surveillance systems: why they are useful, how to start one and what to do next!

A preconference workshop at AACPDM will be held on “Commencing a CP Register”. Please come to this event if you would like to meet those already working in registers and learn about how to set up and run one. San Diego, September 10, 2014

World CP Registers, Surveys and Networks Day

At each International CP Conference we hold an open “World CP Register Day” for all those interested.

2016 – Stockholm

The next day will be held in June/July 2016 in Stockholm.

2012 – Pisa

Program and Presentation

• Challenges in estimating cerebral palsy prevalences and trends
• Achieving mandatory notification of cerebral palsy in Western Australia
• Using the North of England Collaborative Cerebral Palsy Survey (NECCPS) to audit clinical care
• Life expectancy of people with cerebral palsy
• Classification of MRI in cerebral palsy: findings from an Australian study and review
• Exclusion of Progressive Brain Disorders of Childhood for a Cerebral Palsy Monitoring System: A Public Health Perspective
• Challenges in cerebral palsy surveillance: seeking harmony in inclusion and exclusion criteria

2009 – Sydney

Report of the international survey of cerebral palsy registers and surveillance systems, 2009 Smithers-Sheedy, H, McIntyre, S, Watson, L, Yeargin-Allsop, M, Blair, E, Cans, C

If you are interested in joining this cluster please contact us.