Neuromuscular Research Study Project
MDI has joined forces with Genzyme, the biotech company who developed the first drug to treat Pompe Disease, to award funding to Dr. Aisling Ryan and Prof. Orla Hardiman, Consultant Neurologists in Cork University Hospital and Beaumont Hospital. This funding is in relation to a study that will run over the next two years, “A Population-Based Epidemiologic Study of Adult Neuromuscular Disease in the Republic of Ireland”.
This study is important as we do not have any reliable statistics showing how many people in this country have neuromuscular conditions, and there are also a number of people who do not have a complete diagnosis. There is already a treatment for Pompe Disease and we look forward to treatments becoming available for other conditions. Therefore it is important that people have the right diagnosis and that they can be identified so their condition can be appropriately managed.
This project is also a good example of the benefit of patient organisations, clinicians and industry coming together, and the aim is that it will lead to benefits for adults with neuromuscular conditions.
In May 2012, Dr. Stela Lefter was appointed Neuromuscular Research Fellow to work on this study. She is based in Cork University Hospital but she will also be at muscle clinics in Beaumont. Stela attended the MDI AGM on Saturday 28th April 2012 where she spoke about the aims of this project and what it entails. Click here for more details.
This study is important as we do not have any reliable statistics showing how many people in this country have neuromuscular conditions, and there are also a number of people who do not have a complete diagnosis. There is already a treatment for Pompe Disease and we look forward to treatments becoming available for other conditions. Therefore it is important that people have the right diagnosis and that they can be identified so their condition can be appropriately managed.
This project is also a good example of the benefit of patient organisations, clinicians and industry coming together, and the aim is that it will lead to benefits for adults with neuromuscular conditions.
In May 2012, Dr. Stela Lefter was appointed Neuromuscular Research Fellow to work on this study. She is based in Cork University Hospital but she will also be at muscle clinics in Beaumont. Stela attended the MDI AGM on Saturday 28th April 2012 where she spoke about the aims of this project and what it entails. Click here for more details.
