Now let’s travel further away from Europe
The Australian MND Registry started collecting information on people living with MND in 2004 and its aims are to improve patient care, continuously evaluate patient management, improve the understanding of MND/ALS and to form significant scientific research collaborations.
The Australian MND Registry has recruitment sites covering New South Wales, Western Australia, South Australia, Queensland and Victoria.
In Canada, the ALS Registry is part of the Canadian Neuromuscular Disease Registry. This registry recruits people living with over 40 different neuromuscular diseases. Since 2010, the Canadian Neuromuscular Disease Registry has recruited 1,085 people living with ALS and has shown an average age of onset of 60 years of age.
United States of America
The National ALS Registry is the largest of the known MND/ALS registries around the world. It started in 2010 and since then has collected information on 15,927 people living with ALS (with a peak age of onset for ALS of between the ages of 60-69 years of age). The aims of the National ALS Registry are to describe the incidence, prevalence, mortality, demographics, and risk factors for ALS. Data in the National ALS Registry is collected in two ways:
- Using data from national administrative databases (for example, Medicare and the Veterans Administration)
- From information entered via the online Registry web portal by people living with ALS
People who join via the online Registry web portal can answer 17 questionnaires about potential risk factors that have been associated with the development and onset of ALS.