GOVERNANCE, COORDINATION AND MANAGEMENT
The Assembly of the member centers deliberates about all the activities of the Consortium, and in particular about the new members to include and the new collaborative studies to carry out.
The Scientific Coordinator moderates the Assembly and is the representative of the Consortium towards the external parties. The Deputy Coordinator assists the Scientific Coordinator in his/her functions and fully upholds the role and tasks of the Scientific Coordinator in his/her absence or unavailability.
The Data Manager coordinates and manages all the activities of the different bodies of the Consortium, in particular the collection and keeping of the patient data and their sharing for the collaborative studies of the Consortium, and provides the technical and logistical support. The Data Manager can manage the project for the execution of a specific study, upon request of its coordinator.
All people in charge of the Coordination and Management of the IAHCRC Consortium offer their services on an entirely voluntary basis and receive no payments for their work.
Current Scientific Coordinator: Prof. Alexis Arzimanoglou, Epilepsy, Sleep and Pediatric Neurophysiology Dpt. University Hospitals of Lyon, France; coordinator of the GPC-AHC Correlation Study
Current Deputy Coordinator: Prof. Mohamad Mikati, Division of Pediatric Neurology and Department of Neurobiology, Duke University, School of Medicine, Durham, NC, USA; learder of the Modeling Standardization Workgroup
Current Data Manager: Dr. Eng. Rosaria Vavassori, founder and past president of A.I.S.EA Onlus, Italy; Manager of the ENRAH Registry (2005-2009) and of the nEUroped Registry (since 2008).
Dr. Rosaria Vavassori, closing the
Second Symposium on ATP1A3 in Disease (Rome, 23 – 24 September 2013),
presents the global alliance of the researchers, the patients and all the stakeholders,
for the progress of the collaborative research and of the care of AHC presentation