International Cerebral Palsy
Genomics Consortium


In March 2017, the International Cerebral Palsy Genomics Consortium (ICPGC) was formed. It is an unincorporated collaboration among entities and individuals pursuing the common mission of accelerating progress in cerebral palsy genomic research. The consortium aims to achieve this goal by advancing a common infrastructure of genomics and clinical data, and harmonising approaches to enable effective and responsible sharing of genomics and health-related data.
Our goal is to work as an integrated, collaborative international network of clinicians, researchers, and advocates in order to unlock the molecular basis of cerebral palsy using genomics and related tools, and to facilitate the development of novel therapies to improve the health and quality of life of individuals with cerebral palsy.

CP Governance

The ICPGC Governance Council manages the overall scientific direction of the ICPGC, its business and affairs including, but not limited to: scientific priorities; strategy regarding funding support; review of new consortium membership; interaction with stakeholders including governments, funders, non-profit and non-governmental organizations, advocacy groups, and others; and all other matters identified from time to time as requiring GC review, including matters arising from periodic ICPGC conference meetings.

Governance Chair

Dr. Richard Wintle, PhD
Assistant Director, The Centre for Applied Genomics; Assistant Director, CP-NET Cerebral Palsy Integrated Discovery Network

Affiliations: The Centre for Applied Genomics and Programme in Genetics and Genome Biology, The Hospital for Sick Children; CP-NET Cerebral Palsy Integrated Discovery Network

Location: Toronto, Canada

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Governance Members


Prof. Gareth Baynam, MBBS, DCH, FRACP, A/FAIDH, PhD
Medical Director, Rare Care Centre, Perth Children’s Hospital; Medical Lead, rare Disease, Perth Children’s Hospital; Head, Western Australian Register of Developmental Anomalies; Program Director, Undiagnosed Diseases Program WA, Genetic Services of Western Australia.

Affiliations: Western Australian Department of Health – Genetic Services of Western Australia; Western Australian Register of Developmental Anomalies, King Edward Memorial Hospital; Office of Population Health Genomics, Public and Aboriginal Health Division, Perth Children’s Hospital, University of Western Australia, University of Notre Dame Australia, Curtin University, Melbourne University, Telethon Kids Institute.

Location: Perth, Australia

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A/Prof. Julie Cohen, ScM, CGC
Assistant Professor; Director of Genetic Counselling Service

Affiliations: Kennedy Krieger Institute

Location: Baltimore, USA

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Prof. Michael Fahey, MBBS (Hons), PhD, FRACP
Director of Neurogenetics; Head of Child Neurology

Affiliations: Monash Paediatrics, Monash University; Monash Children’s Hospital

Location: Melbourne, Australia

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Prof. Jozef Gecz, PhD, FAA, FAAHMS, FFSc(RCPA)
Chair for the Prevention of Childhood Disability; NH&MRC Senior Principal Research Fellow

Affiliations: The Robinson Research Institute, The University of Adelaide; Adelaide Medical School, The University of Adelaide; and South Australian Health and Medical Sciences Institute

Location: Adelaide, Australia

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A/Prof. Andres Moreno De Luca, MD, MBA, DABR
Assistant Professor, Diagnostic Neuroradiologist

Affiliations: Queens’s University, Kingston Health Sciences Centre

Location: Kingston, Canada

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A/Prof. Dr. Uğur Özbek
Director, Institute of Health Sciences; Director, Center for Rare and Undiagnosed Disease (ACURARE); Chair, Department of Medical Genetics, School of Medicine, Acibadem University

Affiliations: Acibadem University

Location: Istanbul, Turkey

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Dr. Heather Hanson Pierce
Genetic Counsellor, NeuralNET Project

Affiliations: University of Cambridge

Location: Cambridge, UK

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Dr. Charles A Steward, PhD
Head of Patient and Participant Engagement, Genomics England

Affiliations: Genomics England (UK); Genomics England Participant Panel member (UK); Simons Searchlight Community Advisory Committee member (USA); Hope for Paediatric Epilepsy (HOPE) – London, UK; UK Infantile Spasms Trust (UKIST); Lifetime member of Epilepsy Society

Location: Germany / UK

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Ms. Yana Wilson, MIPH
Research Officer

Affiliations: Cerebral Palsy Alliance Research Institute, University of Sydney; Garvan Institute of Medical Research

Location: Sydney, Australia

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Dr. Michael Zech MD, PhD
Albrecht Struppler Clinician Scientist Fellow

Affiliations: University Hospital Rechts der Isar, Technical University of Munich

Location: Munich, Germany

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Prof. Changlian Zhu, MD, PhD

Affiliations: University of Gothenburg; Zhengzhou University

Location: Gothenburg, Sweden; Zhengzhou, China

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