Let us start by looking at the registers on our own doorstep
The Scottish MND Register started in 1989 and began with GPs and other clinicians collecting information about people living with MND until 2010. This successfully collected information on 72% of the people predicted to be living with MND in Scotland. After a hiatus, the Scottish MND Register re-launched in 2016 with a self-registration website.
The Scottish Government has also provided funding for MND Research Nurses who are able to help with the collection of this data (with a ratio of 1 MND Research Nurse to every 25 people living with MND in Scotland) and as a result, the Scottish MND Register has now collected information on more than 90% of the people predicted to be living with MND in Scotland.
The Scottish MND Register is run through a project called CARE-MND, which is a national platform empowering people living with MND in Scotland to directly influence the provision of clinical care and research.
The information that has been collected along with DNA samples, has resulted in a number of scientific projects, including a paper published in 2017 in the Journal of Neurobiological Aging demonstrating that people who had a genetic variation in the C9orf72 gene were more likely to have bulbar onset symptoms (difficulty with speech and/or swallowing).
Republic of Ireland
The Irish MND Register took a different approach to collecting data. Instead of asking people to “sign-up” to join the Register, the Irish MND Register began in 1994/5 by compiling information from Hospital Data collected from all the major hospitals and the Register of Deaths (to capture the information from people living with MND who had died). Now the data is automatically and anonymously captured at diagnosis by the diagnosing doctor/clinician. The Irish MND Register now includes information from over 2,300 people living with MND. In 1998, collection of DNA samples began, and to date they have collected over 1,250 DNA samples.
The Dutch ALS Registry or ALS database as it is sometimes called, collects information from people who have been diagnosed with ALS at one of the University Medical Centres (UMC) collaborating in the Netherlands ALS Centre. Since it began in 2006, there have been 3,300 people living with ALS included in the ALS database. This registry has shown that the median (average) age when symptoms started was 63 years of age and the most common site of symptom onset was lumbosacral (spinal onset with weakness in the limbs).
The NMD-ES Amyotrophic Lateral Sclerosis Registry is part of the national neuromuscular disease registry in Spain (NMD-ES) that includes people living with 10 different neuromuscular diseases (diseases that affect how muscles and nerves work).
Between 2004 and 2013, they had collected information on 491 people living with ALS who were incident cases from 29 hospitals across Spain, this included 41 incident cases within the Catalonia region alone.