International Cerebral Palsy
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.
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.
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
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
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
A/Prof. Andres Moreno De Luca, MD
Assistant Professor, Autism & Developmental Medicine Institute and Genomics Medicine Institute; and Associate Neuroradiologist, Department of Radiology, Geisinger
Affiliations: Autism & Developmental Medicine Institute, Genomic Medicine Institute, Diagnostic Medicine Institute; and Department of Radiology, Geisinger
Location: Lewisburg, PA, USA
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. 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
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