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Irish Motor Neurone Disease Register

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This page can be referred to using the following tiny url: http://tinyurl.com/cd4bcep

Creator:

National Motor Neurone Disease Clinic, Beaumont Hospital

Subject Keywords: Motor Neurone Disease Register
Set: Chronic Conditions
Rare Disease
Rare Diseases
Conditions
Catalogue: Data
Primary Data Sources
Type: Database
Region: Republic of Ireland
Description:

The Irish Register of Motor Neurone Disease (MND) includes all known patients diagnosed with MND each year. It dates back to 1994 and it now has clinical information from over 1,400 patients. The register is maintained at the National MND Clinic at Beaumont Hospital.

The Register is one of the largest and most complete in the world and was made possible by support from the IMNDA.

A DNA bank was added in 1998 which contains samples from over 300 patients. The Register must be constantly updated, and if possible, to continue to include everybody in Ireland with MND. Although no personal details are uploaded on the register because all of the information is coded in advance, some personal details are needed in order to verify the age, the date of onset and the type of MND. Data collected includes date of birth, date of onset and type of MND, clinical features, progression, survival, presence of associated features including cognitive decline.

 

Date:

01/01/2012

Rights: © National Motor Neurone Disease Clinic
Suggested citation:

National Motor Neurone Disease Clinic, Beaumont Hospital. (2012) Irish Motor Neurone Disease Register [Online]. Available from: http://www.thehealthwell.info/node/15863 [Accessed: 24th March 2017].

  

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