Governance
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 conduct 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: Dr. Eleni Panagiotakaki, Epilepsy, Sleep and Pediatric Neurophysiology Dpt. University Hospitals of Lyon, France
Current Deputy Coordinator: Dr. Elisa De Grandis, Child Neuropsychiatry Dpt. G. Gaslini Children's Hospital and University of Genoa, Italy
Past Scientific Coordinators: Prof. Mohamad Mikati, Division of Pediatric Neurology and Department of Neurobiology, Duke University, School of Medicine, Durham, NC, USA; Prof. Alexis Arzimanoglou, Department of Neurology, Hospital Sant Joan de Deu, Barcelona, Spain.
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 (2008-2013).
Dr. Rosaria Vavassori, closing the
Second Symposium on ATP1A3 in Disease (Rome, 23 – 24 September 2013),
presents the global alliance of researchers, patients and all stakeholders,
for the progress of the collaborative research and of the care of AHC presentation
last update 15 April 2025