The MND Register for England, Wales and Northern Ireland
Despite the NHS providing care across England, Wales and Northern Ireland, you may be surprised to learn that there is no central place where researchers or healthcare workers can access information about every person living with MND. This means that no one knows exactly how many people at any one time are living with MND (this is known as the prevalence of a disease) nor understand how many people are newly diagnosed with MND each year (this is known as the incidence of a disease).
Currently, the best we can do is estimate the incidence and prevalence of MND. This is where the MND Register comes in. By recruiting people living with MND in England, Wales and Northern Ireland into a central database (called the MND Register of England, Wales and Northern Ireland) we will be able to look at the true incidence and prevalence of MND and whether this is increasing or decreasing over time. We will also be able to ascertain whether there are any “hot spots” or clusters of people living with MND in certain areas and work towards making sure we have enough care provision in those areas. It will also help us to study whether there are environmental exposures in these “hot spots” that might be associated with the risk of developing MND.
Patient registries such as the MND Register of England, Wales and Northern Ireland are not a new concept, but the logistics of setting up a patient register across dozens of different NHS trusts, each of which may have different Research and Development (R&D) and IT policies is a big challenge and there have been a number of bureaucratic hurdles that have had to be overcome to get the MND Register of England, Wales and Northern Ireland set up and ready to recruit people living with MND. Despite these hurdles, the NHS provides a very strong, and quite possibly a unique environment for a population registry for people living with MND.
In this newsletter we will look at some of the other registers around the world that are specifically for people living with MND or Amyotrophic Lateral Sclerosis (ALS), as it is known in some parts of the world. You will note in the table, that some countries have several different registries that concentrate on a single region rather than spanning an entire country. These single region registries are usually based on the catchment area for a specific hospital and/or clinician researcher and create a "local" registry of people living with MND/ALS. Registries that span a whole country (or as in the case of the MND Register of England, Wales and Northern Ireland, more than one country) are population based registries that will capture information from people living with MND from lots of different regions and areas.
Preliminary data from the first 655 people who joined the MND Register of England, Wales and Northern Ireland show that the most common site of onset (where the first symptom appears in the body) is spinal (weakness in limbs), the average age of diagnosis is 63 years of age and more males than females are diagnosed with MND.
To date, over 1,900 people have signed up to the MND Register of England, Wales and Northern Ireland, making it one of the biggest MND Registers in Europe. But, how does it compare to the other MND/ALS Registries out there?
From the 20 MND/ALS registries that we are aware of from around the world (containing information over 32,000 people living with MND/ALS) discussed in this newsletter, only seven are national registries that span a whol country and are continuous and ongoing in their recruitment of people living with MND/ALS.
The first registry was founded at Limoges Hospital, France in 1977 and ran until 1985. This was a regional registry (recruiting people living with ALS from the hospitals 'catchment' area) and collected a total of 69 people living with ALS.
The longest running register is also a regional registry called the South-East England register for ALS (SEALS). SEALS has been running for 29 years and has collected 575 people who have been newly diagnosed with MND (incident cases). The average age of onset was 57.0 years of age, with limb onset being the most common site of onset and more males than females diagnosed with MND.
For the purpose of this newsletter, we will look at the seven national registries in more detail, but please see the table for further information on all of the 20 MND/ALS registries discussed in this e-newsletter.