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Population-Based Epidemiologic Study of Adult Neuromuscular Disease in the Republic of Ireland

We wish to invite patients with neuromuscular diseases to participate in this study. This study is directed by Dr. Aisling Ryan, Cork University Hospital and Prof. Orla Hardiman, Beaumont Hospital. The aim of this study is to establish the prevalence of neuromuscular diseases in Ireland and to highlight the service needs of these patients. Specific disease registries for some neuromuscular conditions will be developed. These will serve as a good source for further original research and facilitate the inclusion of Irish patients in clinical trials of novel therapeutic agents.

We are interested in identifying any patient, 18 years or older, living in the Republic of Ireland for a minimum of 5 years with the following neuromuscular conditions: Inherited neuropathy and acquired inflammatory neuropathy (ex: Guillain Barre syndrome) Spinal muscular atrophy (Types 3 & 4 ) Kennedys disease (X-linked bulbospinal muscular atrophy) Lambert Eaton Myasthenic Syndrome &neuromyotonia Myasthenia Gravis &Congenital Myasthenic Syndrome Muscular Dystrophies &Congenital myopathies Muscle channelopathies Myotonia & Paramyotonia congenita Metabolic myopathies Inclusion body myositis

Those who are interested in participating in this study are invited to contact: Dr Stela Lefter, Neuromuscular Research Fellow, Cork University Hospital Phone: 086 0245886, Email: stela.lefter@hse.ie