These pluridisciplinary consultations take a global approach to the pathologies of the patients and their families:
- The diagnosis and follow-up of the pathology are carried out by the reference centre for neuromuscular disorders.
- The genetic counselling and medical, psychological and social management are carried out by the functional unit of clinical genetics.
1992 : first muscular pathology consultation (Prof Fardeau and Prof Brunet in the Risler Sector of the Salpêtrière Hospital)
1997 : creation of a new muscular pathology clinical unit (Prof Eymard, Salpêtrière Hospital and the functional explorations unit for muscle conditions). Situated in the Babinski Building, the clinical unit belongs to the Neurology Department of the Mazarin Sector (Prof Jean-Yves Delattre and Prof V. Meininger).
2000 : creation of new specialist consultations (peripheral nerve, Charcot-Marie-Tooth, SLA). 7500 dossiers for muscle disease patients are recorded.
2001 : arrival of the genetic team of Prof Alexis Brice. The consultation premises are rearranged, thanks to the AFM: three new offices were opened. 9300 dossiers for muscle disease patients are recorded.
2004 : more than 14000 dossiers for muscle disease patients are recorded.
2005 : arrival of the team headed by Drs Bouche and Léger, responsible for dysimmunitary neuropathic affections. 400 dossiers for dysimmunitary neuropathic patients are recorded.
2009 : positive evaluation of the Center of reference for the diseases neuromusculaires to belong to the next rare diseases plan.
The decree of the Ministry of Health and Social Protection dated 19 November 2004 concerning the labelling of centres of reference for the management of rare diseases designated the Institute of Myology, Pitié-Salpêtrière Hospital, as a Centre for Reference for neuromuscular diseases, along with the specialist departments of the following hospitals: Trousseau (neuropaediatrics department, Dr Mayer and Prof Billette de Vilkemeur) for the management of children affected with chronic neuromuscular diseases, Rothschild for physiotherapy (department of Prof Thoumie) and Tenon (department of Prof Lacau) for the management of pharyngeal-laryngeal disorders. This organisation will open up possibilities of coordinated children-adult management of neuromuscular diseases and their complications.
This labelling will allow the Institute of Myology to develop its clinical management capacities (by shortening the waiting tilmes for pluridisciplinary consultations and emergencies, and recruiting new medical and paramedical personnel) and to consolidate and develop the human and material means devoted to clinical research protocols. The Coordinator at the Institute of Myology is Prof Bruno Eymard, neurologist and Director of the reference centre for neuromuscular disorders. Dr Michèle Mayer, a neuropaediatrician at the Saint-Vincent de Paul Hospital is the Co-coordinator.
Update: March 2010