The Irish Register of MND, is the point from where all Irish MND Research can evolve The register 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 one of the largest and most complete in the world and was made possible by suppport from the IMNDA.
A DNA bank was added in 1998. This bank contains samples from over 300 patients, and is also recognised as one of the best in the world.
The continued success of Irish MND research depends heavily on the constant collaboration of the relevant people. The Register must be constantly updated, and we would like, 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, we need some personal details in order to verify the age, the date of onset and the type of MND. We also need contact details for those wishing to donate DNA for our research.
Using the Irish Register, and more recently the DNA bank we have made a number of significant breakthroughs in MND research, including the discovery of a new gene that might help to find new treatments. This finding was made possible by the support of people in Ireland with MND, their families and their general practitioners.
If you would like to find out more details about the Irish MND/ALS Register, email Catherine Lynch () or alternatively you may telephone on (01) 809 3874.
