The Atlas of MS 2013, the most extensive worldwide study of the disease, is due to be launched on 4 October.
Background to the Atlas
In September 2008, MSIF and the World Health Organization (WHO) published Atlas: Multiple Sclerosis Resources in the World 2008. This 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.
In 2012/2013 we carried out a second survey in order to update the information in the Atlas.
What is the Atlas for?
The updated Atlas of MS website covers 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 124 countries around the world.
The main aims of the website are to:
• stimulate additional systematic data gathering, particularly data on the epidemiology of MS
• highlight gaps in resources and services
• encourage the development of much-needed policy, services and training.
Why has the Atlas been updated?
A number of factors led to the decision to update the Atlas:
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.
In recent years several new therapies, including oral disease modifying drugs, 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.
Who funded the Atlas?
MSIF would like to thank the Vanneau Trust, Biogen Idec, Genzyme, Novartis, Merck Serono, Synthon and Teva for their financial support for the Atlas of MS 2013.
Where are we now?
The Atlas of MS 2013 report has beenprinted and is being distributed to MSIF members across the world. Thewebsite, with more detailed country-by-country information onprevalence, diagnosis, treatment and support, is being developed andwill go live in late September. The website will be updated as more data becomes available.
What happens next?
The Atlas of MS 2013 is being launched to the MS research community at the ECTRIMS Congress in Copenhagen on Friday 4 October.
The Atlas 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. It will also 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 2013, please contact MSIF’shead of international scientific and medical research.