Syringomyelia and Chiari Syndrome Interregional Consortium of Piemonte, Valle d’Aosta, Liguria, Sicilia, Lombardia, Toscana and Lazio
The cooperative activity aimed for patients affected by Chiari Syndrome and Syringomyelia was born in 2008 as a proposition from the Multidisciplinary Group of CTO Hospital, Torino, Italy instituted for this kind of disease with the main purpose of defining a Diagnostic-Therapeutic-Assistance Path shared on an Interregional level (Piemonte, Valle d’Aosta, Liguria, Sicilia, Lombardia, Toscana and Lazio).
Chiari Syndrome and Siringomyelia are diseases of high economic and social impact because:
- they’re chronic and complex diseases;
- they’re not supported by shared therapeutic and diagnostic protocols;
- on too many times, classifications are not uniform;
- patients with functional and invalidating deficits need a multidisciplinary approach and full-time assistance.
- to produce and share diagnostic criteria;
- to define a Diagnostic-Therapeutic path shared on an Interregional level;
- to support research projects and collaborations with the Scientific Societies and voluntary Associations;
- to overhaul and choose current guidelines;
- to draft different protocols for both symptomatic and asymptomatic forms, for childhood and for adult age;
- to support genetic studies and genotypic/phenotypic correlations;
- to support, inside the consortium, the standardization of classifications and diagnostic-therapeutic paths;
- to support meetings among experts, with conferences, video-conferences, talks of clinical cases, doctor-patient meetings
Consortium Activities 2010-2014:
- Definition of reference criteria for the patient access to path for the exemption from contribution (Nota prot. 33363/DB2005, 17/11/2010, Piemonte Region);
- Publication of Diagnostic, Surgical and Rehabilitative Recommendations shared by the “Syringomyelia-Chiari” Interregional Work Group of Piemonte and Valle d’Aosta (Circolare Assessorile, 23/11/2011);
- Census 2011-2012 within of Syringomyelia and Chiari Syndrome Interregional Consortium and of the Interregional Rare Diseases Network of Piemonte and Valle d’Aosta, and in collaboration with National Institute of Health;
- Doctors - Patients Meeting: “Patients and Researchers together to win” on 27th Feb. 2010, CTO – Torino, Italy;
- First National Theoric-Practical Updating Course: “Syringomyelia and Chiari Syndrome: up-to-date on diagnosis and therapy” – 18th Jan. 2012, CTO – Torino, Italy;
- Second National Theoric-Practical Updating Course “Syringomyelia: focus on diagnosis and therapy” – 8th Nov. 2013, CTO - Torino, Italy.