Dr Suelette Dreyfus is an expert on whistleblowing and technology, data retention, privacy and national security.
The Epilepsy Genetics Initiative (EGI) based in the US with the Australian partner at the University of Melbourne, brings together research groups to find cures for people with epilepsy.
Epilepsy is a diverse group of neurological disorders of different types and severities, which are characterised by recurrent seizures.
Professor Ingrid Scheffer AO from the University of Melbourne, Florey Institute of Neuroscience and Mental Health and Austin Health said that up until now, epilepsy has been treated by trial and error with no standard of care to determine which of the many treatments might work in combating different types of epilepsy.
“Over the past decade however, many genes have been identified that cause epilepsy. Knowing the cause sets the stage for the identification of precision treatments targeted to that cause,” Professor Scheffer said.
“For precision medicine to work, we need rapid and thorough genetic diagnosis of patients with epilepsy for the development of their individualised treatments,” she said.
“The EGI has created a central data repository to hold the genetic data of people with epilepsy resulting in more accurate diagnoses and targeted treatments.”
Information will be made available to researchers as they seek to identify additional precision therapies.
Professor Stephen Smith, Dean of the Faculty of Medicine, Dentistry and Health Sciences said Melbourne is the only centre outside of the United States to be invited to join this collaboration.
“This affirms our expertise in the understanding of epilepsy,” he said.
“Along with our international collaborators, University of Melbourne staff led by Professor Ingrid Scheffer and Laureate Professor Sam Berkovic AC, will open up important lines of enquiry to bring about new and emerging solutions. Such advances are enhanced through new technologies,” he said.
Academic Partners include: Columbia University, Boston Children’s Hospital, Children’s Hospital of Philadelphia, Duke University, The Ann and Robert H. Lurie Children’s Hospital of Chicago, New York University, University of California San Francisco, University of Melbourne.
Citizens United for Research in Epilepsy (CURE) is the leading nongovernmental agency in the US fully committed to funding research in the epilepsies. CURE is at the forefront of epilepsy research, raising millions to fund innovative research and other initiatives that will lead the way to a cure.