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Chiari and Syringomyelia Consortium: a model of multidisciplinary and sharing path for Rare Diseases

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Abstract

Piemonte and Valle d’Aosta Interregional Network for Rare Diseases (RD) is a model of “diffuse” network; it involves all the health system specialists devoted to the diagnosis, the therapy and the follow-up of a RD. The Consortium is a multidisciplinary team operating throughout the Region composed of volunteer Physicians and Biologists that promotes periodical meetings to develop shared protocols. In 2008 the Specialist-Technical Committee for the Interregional RD Network approved the set up of the “Chiari and Syringomyelia Consortium” (CSC) with two specific objectives: to identify the shared diagnostic criteria and to develop the interdisciplinary diagnostic-therapeutic-assistance path (DTAP) to be used interregionally. Other objectives are: to define the prevalence of the pathologies (both symptomatic and asymptomatic, both in adults and children) and to improve collaboration between the patient Associations and the Physicians.

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References

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  2. Italia. Decreto Ministeriale 18 maggio 2001, n. 279. Regolamento di istituzione della rete nazionale delle malattie rare e di esenzione dalla partecipazione al costo delle relative prestazioni sanitarie, ai sensi dell’articolo 5, comma 1, lettera b), del DLvo 29 aprile 1998, n. 124. GazzettaUfficiale - Supplemento Ordinario 12 luglio 2001, n. 160

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Acknowledgments

The authors thank Barbara Wade for help to the English language. This research was funded in part by the ‘‘Ricerca Sanitaria Finalizzata Regione Piemonte’’, 2008.

Conflict of interest

The authors declare that there is no actual or potential conflict of interest in relation to this article.

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Authors and Affiliations

  1. Clinical Neurophysiology Unit, AOU CTO, Turin, Italy

    Palma Ciaramitaro

  2. Neurosurgery Division, AOU CTO, Turin, Italy

    Palma Ciaramitaro & Giuliano Faccani

  3. Centro di Ricerche di Immunopatologia e Documentazione su Malattie Rare, Struttura Complessa a Direzione Universitaria di Immunologia Clinica Ospedale S.G. Bosco, Turin, Italy

    Simone Baldovino & Dario Roccatello

  4. Department of Neurology, Ospedale Regionale, Aosta, Italy

    Edo Bottacchi

Authors
  1. Palma Ciaramitaro
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  2. Simone Baldovino
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  3. Dario Roccatello
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  4. Edo Bottacchi
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  5. Giuliano Faccani
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Corresponding author

Correspondence to Palma Ciaramitaro.

Additional information

On behalf of the Interregional Piemonte and Valle d’Aosta “Chiari and Syringomyelia” Consortium.

The Interregional Piemonte and Valle d’Aosta “Chiari and Syringomyelia” Consortium:

The Interregional Piemonte and Valle d’Aosta “Chiari and Syringomyelia” Consortium:

Palma Ciaramitaro, Gianluca Isoardo, Paolo Costa, Clinical Neurophysiology, AOU CTO Torino, Italy; Giuliano Faccani, Michele Naddeo, Fulvio Massaro, Neurosurgery Division, AOU CTO Torino, Italy; Consuelo Valentini, Marilena Ferraris, Neuroradiology Division, AOU CTO Torino, Italy; Maria Vittoria Actis, Ilaria Rosso, Rehabilitation and Functional Recovery Division, AOU CTO Torino, Italy); Mauro Petrillo, Neuro-Urology Division, AOU CTO Torino, Italy; Stefano Aleotti, Antonio Bruno, Pasquale Cinnella, Spinal Surgery Division, AOU CTO Torino, Italy; Enrico Pira, General Medicine, AOU CTO Torino, Italy; Patrizia Consolino, Neurosurgery Division, CTO Hospital, Torino, Italy; Dario Roccatello, Simone Baldovino, Centro di Ricerche di Immunopatologia e Documentazione su Malattie Rare, Struttura Complessa a Direzione Universitaria di Immunologia Clinica, Ospedale S.G. Bosco, Torino, Italy; Paola Peretta, Pediatric Neurosurgery, Regina Margherita Children’s Hospital, Torino, Italy; Alessandro Ducati, Marco Fontanella, Neurosurgery Division, Neuroscience Department,Torino, Italy; Enzo Luparello, Neurosurgery Division, Ospedale S.G. Bosco, Torino, Italy; Sergio Duca, Neuroradiology Division, Koelliker Hospital, Torino, Italy; Lorenzo Pinessi, Salvatore Gallone, Innocenzo Rainero, Neurosciences Department, AOU S. Giovanni Battista, Torino, Italy; Dario Giobbe, Neurology Division, AOU S. Giovanni Battista, Torino, Italy; Maria Pia Schieroni, Rehabilitation Division, S. Giovanni Battista, Torino, Italy; Maurizio Gionco, Headache Centre, Department of Neurology, Mauriziano Hospital, Torino; Federico Maria Cossa, Neuromotor Rehabilitation Unit, Casa di Cura Maior, Torino, Italy; Giovanni Asteggiano, Neurology Division, ASL CN2 Alba-Bra, Italy; Alessandro Mauro, Neurology Division, IRCCS Piancavallo-Neurosciences Department, Torino, Italy; Claudio Geda, Neurology Division, ASL Ivrea-Ciriè-Chivasso, Italy; Luca Ambrogio, Neurology Division, Cuneo, Italy; Roberto Cantello, Clinical Neurophysiology, Neurology Division, Novara, Italy; Pietro Versari, Giannantonio Spena, Neurosurgery Division, Civil Hospital, Alessandria, Italy; Claudio Bernucci, Neurosurgery Division, Cuneo, Italy; Carlo Scamoni, Neurosurgery Division, Novara, Italy; Fabrizio Pisano, Maria Tommasi, Rehabilitative Neurology Division, S. Maugeri Foundation, Veruno (NO), Italy; Edo Bottacchi, Department of Neurology, Ospedale Regionale, Aosta, Italy.

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Ciaramitaro, P., Baldovino, S., Roccatello, D. et al. Chiari and Syringomyelia Consortium: a model of multidisciplinary and sharing path for Rare Diseases. Neurol Sci 32 (Suppl 3), 271–273 (2011). https://doi.org/10.1007/s10072-011-0725-y

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  • DOI: https://doi.org/10.1007/s10072-011-0725-y

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