International Cerebral Palsy
Genomics Consortium
About
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
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
A/Prof. Julie Cohen, ScM, CGC
Assistant Professor; Director of Genetic Counselling Service
Affiliations: Kennedy Krieger Institute
Location: Baltimore, USA
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
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
A/Prof. Andres Moreno De Luca, MD, MBA, DABR
Assistant Professor, Diagnostic Neuroradiologist
Affiliations: Queens’s University, Kingston Health Sciences Centre
Location: Kingston, Canada
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
Dr. Heather Hanson Pierce
Genetic Counsellor, NeuralNET Project
Affiliations: University of Cambridge
Location: Cambridge, UK
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
Ms. Yana Wilson, MIPH
Research Officer
Affiliations: Cerebral Palsy Alliance Research Institute, University of Sydney; Garvan Institute of Medical Research
Location: Sydney, Australia
Dr. Michael Zech MD, PhD
Albrecht Struppler Clinician Scientist Fellow
Affiliations: University Hospital Rechts der Isar, Technical University of Munich
Location: Munich, Germany
Prof. Changlian Zhu, MD, PhD
Professor
Affiliations: University of Gothenburg; Zhengzhou University
Location: Gothenburg, Sweden; Zhengzhou, China