Irish Motor Neurone Disease Register
National Motor Neurone Disease Clinic
1994.
1995 — fully rolled out.
The purpose of the Register is to track the incidence, prevalence and clinical features of MND in the Irish population.
All known patients diagnosed with MND each year in the Republic of Ireland.
The Irish MND register includes all known patients diagnosed with MND each year. It dates back to 1994 and it now has clinical information from over 2,300 patients. On average 110 new cases per annum, with 300 people affected at any one time. A DNA bank was added in 1998. This bank contains samples from over 1250 patients.
The Irish MND register includes all known patients diagnosed with MND each year. It dates back to 1994 and it now has clinical information from over 2,300 patients. On average 110 new cases per annum, with 300 people affected at any one time. A DNA bank was added in 1998. This bank contains samples from over 1250 patients.
Consultant neurologists, neurophysiologists, geriatricians, community-based clinical professionals.
Hospital In-Patient Enquiry (HIPE) departments in all major hospitals are searched using International Classification of Disease and Related Health Problems, Ninth Revision (ICD-9) to ascertain and confirm all MND diagnosis. The Central Statistics Office (CSO) Deaths Register is searched using ICD-9 primarily to capture MND cases where the subject passed away shortly after diagnosis. The register is based on direct nationwide chart review/confirmation by the diagnosing physician.
Not available
ICD-9: Amyotrophic lateral sclerosis (ALS), MND, Progressive Bulbar palsy.
Approximately 110 records created on average annually (new cases).
Scientific peer-reviewed publications listed on MND website (www.mnd.ie).
Data continuously updated.
Requests for data or statistics from the register are considered on a case-by-case basis after contact has been made either via the email below or directly to Professor Hardiman.
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