Irish Motor Neurone Disease Register
National Motor Neurone Disease (MND) Clinic.
1994 (Full roll-out 1995)
The purpose of the Register is to track the incidence, prevalence and clinical features of MND in the Irish population. The Register aims to gather a relatively narrow capture of key variables on all MND patients which help us describe the population. More detailed information is gathered through cohort studies to which people identified through the Register are consented separately.
All known patients diagnosed with MND each year in the Republic of Ireland.
Temporally data is collected from a person with MND as soon as they consent to be included which is generally shortly after they are diagnosed. Data collection is actively continued, mainly through the health record until the person dies. After a person is deceased, a limited form of data collection can continue if we receive further information on their family history, usually this occurs when another member of the same family is diagnosed with the condition.
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.
Members of Prof. Hardiman’s ALS Research Team are the most common users. Additional users include European collaborators on jointly funded MND research projects. Patient Advocacy groups, e.g. Irish Motor Neurone Disease Association, avail of statistics generated by the collection for service planning. Allied health professionals with reason to need up-to-date Irish MND statistics for educational or service planning needs.
Age, the date of onset, type of MND, clinical features, progression, survival, presence of associated features including cognitive decline.
Yes data dictionary is in place. Not available.
No national level identifiers used.
Place of residence, gender, education, occupation and occupational status are included in the dataset.
HIPE departments in all major hospitals are searched using 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.
ICD-9: Amyotrophic lateral sclerosis (ALS), MND, Progressive Bulbar palsy.
120 average number of new cases registered annually.
Scientific peer-reviewed publications listed on the TCD website (Click here for publication list).
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.
No.
See http://mnd.ie/research-resources/