A  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  )   Kennedy’s  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

   

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