The IAHCRC Consortium is a network of clinical centres, research labs and scientific organizations producing and collecting the patient data according to unique common formats, protocols and procedures, in order to share them for collaborative studies about AHC and the other ATP1A3 diseases.
Based on the results of such studies, it also produces public documentation to be used as guidelines and recommendations for the health and social care of the AHC and all the ATP1A3 patients.
The activities of the Consortium are organized in three levels:
- the governance level, in charge to the Scientific Coordinator (currently Prof. Alexis Arzimanoglou) and to the Assembly of the members;
- the management and standardization level, in charge to the data manager and to the Standardization Workgroups (currently there are three Workgroups: genotyping, leaded by Prof. Arn van den Maagdenberg; phenotyping, leaded by Dr. Eleni Panagiotakaki; modeling, leaded by Prof. Mohamad Mikati)
- the operation level, in charge to the Clinical Centers and Research labs collecting the data and carrying out the studies of the Consortium.
A Clinical Centre in the Consortium is usually the Reference Centre for the care for AHC and/or other ATP1A3 diseases, at the national level; there can be more than one Reference Centre member of the Consortium in each country.
A Node is a cluster of Clinical Centres and serving Labs that has in charge a single cohort of patients; it collects the patient data in its Node-Database that may also have a linked biobank.
The IAHCRC Charter contains the rules for the work among all the member centers to carry out their collaborative studies, and in particular the rights and obligations of the members. It also describes the organizational structure of the Consortium, in terms of functional bodies and their mutual relationships.