Information from all Registries
Despite different population characteristics and methods that have been used by the MND and ALS Registries across the world, we can see that the results are quite consistent with the average age of diagnosis above 60 years of age, spinal or limb onset (weakness in the arms or legs) as the most common site of onset and more males than females being diagnosed with MND/ALS.
There are also MND/ALS registries in Belgrade, Belgium and the Russian Federation that have recently started their journey, which will all add vital information to our understanding of MND/ALS around the world.
Disease registries are critical tools in understanding how the incidence and prevalence of MND/ALS is changing over time and location.
MND/ALS registries across the world give us an insight into the age when most people are diagnosed and the most common part of the body the disease may be starting in (site of onset).
In addition to helping us understand key information on how the disease is changing over time, collecting information about who has MND/ALS and where they live will help us ensure that care resources are being put into the right areas and study whether there might be environmental factors at play.
Thank you to everyone who has joined the MND Register to date and to everyone who will join the MND Register in the future. The MND Register of England, Wales and Northern Ireland has already become the fourth largest population register for MND/ALS in Europe and as the project continues to move forward apace, is set to become one of the biggest MND/ALS Registers in the world.
We anticipate that the MND Register of England, Wales and Northern Ireland will make a fundamental contribution to our understanding of how MND may be changing across the three countries as well as improvements in treatments over the coming years.
Click on the button below to view the information from all 20 Registries discussed in this newsletter.