MSIF is updating the Atlas of MS in 2012/2013. Read more about why the update is taking place and what happens next.
Background to the Atlas
In September 2008, MSIF and the World Health Organization (WHO) published “Atlas: Multiple Sclerosis Resources in the World 2008”. The publication of the Atlas of MS marked the culmination of a ground-breaking three-year global project which gathered data from 112 countries representing more than 85% of the world’s population.
In addition to the published report, MSIF developed the Atlas of MS website (www.atlasofms.org) which enables users to query the data online, and to compare results across different regions and countries. All of the data can be downloaded from the website as Excel files.
What is the Atlas for?
The Atlas reports on three key themes: the epidemiology of MS, the resources available to diagnose and treat the disease, and the support available to people with MS in 112 countries around the world.
Information published in the Atlas has been used by the scientific community as the basis for new epidemiological research, and by patient organisations to advocate for positive change for people with MS.
Why are we doing an update?
A number of important factors led to the decision to undertake an update of the Atlas of MS:
New data
Since the original Atlas of MS was published, new data on the epidemiology of MS has been collected in many countries. MS registers are becoming increasingly popular, ranging from registers at individual hospitals to integrated national registers that collect data on all new diagnoses and those receiving treatment for MS.
New therapies
In recent years several new therapies, including oral disease modifying drugs such as Fingolimod/Gilenya, have become available. This has changed the range of treatment options available to people with MS in many settings.
Better understanding and diagnosis of affiliated conditions
NMO or Neuromyelitis Optica has long been recognised as a disease distinct from MS, but has become more widely recognised as such. The ability to distinguish between the two using more accurate diagnosis is also becoming more widespread.
Interest in paediatric MS
There is increasing interest in paediatric MS. Children with MS need special consideration in treatment and support, but they may also yield new insights into MS. The updated Atlas will reflect this opportunity to gather information on this little understood group.
Limitations in the original study
Limitations in the original survey were identified during data collection and following publication. In many cases the source of the data provided was not clear, and in others it was not clear if data came from a study of the whole country, or from an extrapolation of regional data.
Where are we now?
The update project is well under way. A new online questionnaire has been developed by the Atlas of MS Update Coordinator with support from an expert advisory group led by Prof Alan Thompson of UCL.
These questionnaires have been distributed to more than 60 countries around the world, and data has started to come back to MSIF. Over the coming weeks we will be distributing the questionnaire to many more countries as they confirm their desire to participate in the update.
What happens next?
MSIF will develop a new and improved Atlas of MS database and website where the Atlas data can be queried and will be displayed in an engaging visual way. This website will be launched at ECTRIMS 2013 and will support future revision to the data as and when updates become available, ensuring that this important resource can be updated more frequently.
We also plan to publish the results of the study in a peer-reviewed scientific journal, and to provide our members and other MS organisations with a summary report of the findings.
The updated Atlas of MS will contribute to the ongoing advocacy work of MS organisations and patient groups, leading to improvements to the quality of life for people with MS. This important piece of work will further encourage international epidemiological and socio-economic comparative research by highlighting the similarities and differences between countries and regions.
For more information about the Atlas of MS, please contact the Atlas of MS Update Coordinator or visit the Atlas of MS website.