Study of Adult Neuromuscular Conditions in Ireland
January 21st, 2019
A Population-Based Epidemiologic Study of Adult Neuromuscular Conditions in the Republic of Ireland
There have been no previous studies in the Republic of Ireland looking at how many adult patients there are with different diseases of the muscles and nerves. We call these conditions ‘neuromuscular conditions’. This study is underway at Cork University Hospital and Beaumont Hospital, Dublin under direction of Dr. Aisling Ryan, Consultant Neurologist, CUH and Prof. Orla Hardiman, Consultant Neurologist, Beaumont Hospital. We are enrolling adult patients with neuromuscular conditions throughout the Republic of Ireland.
Purpose
In this study we would like to find out exactly how many patients there are with different adult neuromuscular conditions in the Republic of Ireland. This will help us to form lists of patients and find out how common these conditions are, and to generate registers of specific conditions. These registers will be a useful way of ensuring that patients can be kept informed about the latest information that might be relevant to their disease including the latest treatment options. Sometimes there are clinical trials of potential new drugs, and registries will facilitate the inclusion of Irish patients with neuromuscular conditions.
Objectives
- To obtain the prevalence data about the number of people with adult neuromuscular conditions in the Republic of Ireland
- To generate specific registries for certain neuromuscular conditions
- To generate specific care programmes for patients with adult neuromuscular conditions
Contact
Click here to find out more information about the study and enrolling procedure from the Patient’s Information Leaflet sample.Those who are interested to participate in the study or have further questions please do not hesitate to contact Dr Stela Lefter, Neuromuscular Research Fellow, mobile: 086 0245886 or via email: stela.lefter@hse.ie
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