1. MS Curves: A new online tool for assessing MS severity
using the MSBase Registry.
Stella E Hughes1, Tim Spelman2, Eric Bianchi3, Samir Méchati3, Helmut Butzkueven2,4, for the MSBase investigators*.  1Department of Neurology, Royal Victoria Hospital, Belfast, United Kingdom. 2Department of Neurology, Royal Melbourne Hospital, Victoria, Australia. 3Rodanotech, Geneva, Switzerland. 4Department of Medicine, Melbourne Brain Centre, The University of Melbourne, Victoria, Australia.
Multiple Sclerosis dataBase
*Trojano M5, Izquierdo G6, Grand’Maison F7, Duquette P8, Girard M8, Lugaresi A9, Grammond P10, Boz C11, Hupperts R12, Petersen T13, Giuliani G14, Oreja-Guevara C15, Iuliano G16, Lechner-Scott J17, Bergamaschi R 18,
Alroughani R19 , Rio ME20, Verheul F21, Fernandez-Bolaños R22, Fiol M23, Van Pesch V24, Slee M25, Cristiano E26, Barnett M27, Gray O28, Saladino ML29, Cabrera-Gomez J-A30, Deri N31, Flechter S32, Herbert J33, Vella N34,
Shaw C35, Savino A36, Vucic S37, Shaygannejad V38, Moore F39, Petkovska-Boskova T40, van Munster E41, Paine M42, Oleschko Arruda W43, Sirbu C-A44
5University of Bari, Bari, Italy,6Hospital Universitario, Sevilla, Spain, 7Neuro Rive-Sud, Quebec, Canada, 8Hopital Notre Dame, Montreal, Canada, 9Ospedale Clinizzato Ss. Annunziata, Chieti, Italy, 10Hotel-Dieu de Levis, Quebec, Canada, 11Karadeniz Technical University, Trabzon, Turkey, 12Maaslandziekenhuis, Sittard, The Netherlands, 13Kommunehospitalet, Arhus C, Denmark, 14Ospedale di Macerata, Macerata, Italy, 15University Hospital La Paz, IdiPAZ, Madrid Spain, 16Ospedali Riuniti di Salerno, Salerno, Italy, 17John Hunter Hospital, New South Wales, Australia, 18Neurological Institute IRCCS Mondino, Pavia, Italy, 19 Amiri Hospital, Qurtoba, Kuwait, 20 Hospital S. João, Porto, Portugal, 21Groen Hart Ziekenhuis, Gouda, Netherlands, 22Hospital Universitario Virgen de Valme, Seville, Spain, 23FLENI, Buenos Aires, Argentina, 24Cliniques Universitaires Saint-Luc, Brussels, Belgium, 25Flinders Medical Centre, South Australia, Australia, 26Hospital Italiano, Buenos Aires, Argentina, 27Brain and Mind Research Institute, New South Wales, Australia, 28Craigavon Area Hospital, Craigavon, Northern Ireland, 29INEBA, Buenos Aires, Argentina, 30Centro Internacional de Restauracion Neurologica, Havana, Cuba, 31 Hospital Fernandez, Capital Federal, Argentina, 32Assaf Harofeh Medical Center, Beer-Yaakov, Israel, 33New York University Hospital for Joint Diseases, New York, USA, 34Mater Dei Hospital, Msida, Malta, 35Geelong Hospital, Victoria, Australia, 36Consultorio Privado, Buenos Aires, Argentina, 37Westmead Hospital, New South Wales, Australia, 38Al-Zahra Hospital, Isfahan University of Medical Sciences, Isfahan, Iran, 39Jewish General Hospital, Montreal, Canada, 40Clinic of Neurology Clinical Center, Skopje, Macedonia, 41Jeroen Bosch Ziekenhuis, Ben Bosch, Netherlands, 42St Vincents Hospital, Melbourne, Australia, 43Instituto de Neurologia de Curitiba, Curibita, Brazil, 44Central Clinical Emergency Military Hospital, Bucharest, Romania.
Background
Screenshots
The wide heterogeneity in disability for individuals with Multiple Sclerosis (MS) creates a challenge when gauging disease severity. We recently confirmed utility of Expanded Disability Status Scale (EDSS) ranking at given disease durations, as originally used to devise the MS Severity Score (MSSS), to assess MS severity in the MSBase dataset. We now report the development of a new online tool, available free to all neurologists, on the MSBase platform ( which allows comparison of an individual’s disease severity with those with the same disease duration.
Figure 1. EDSS progression over time for the ‘relapse-onset’ subgroup in the MSBase Registry. (Brown line illustrates a hypothetical patient’s EDSS scores at three time points).
Methods
The MSBase registry is a large international database which tracks long-term outcomes in MS. Using this data, we created a web-based tool to delineate disease-duration dependent disability ranks in ‘real-time’, for cases of relapse-onset or primary progressive MS in our dataset. Manually inputting an EDSS score for a disease duration gives a disability rank for that individual (as a median percentile displayed graphically), as compared to cases in the MSBase dataset of >120,000 EDSS scores in 19,500 individuals. Additionally, entering serial EDSS scores allows the user to chart relative disease progression over time. Although we do not advocate basing treatment decisions on the output of this tool, a response to a drug may be reflected in the disease course pattern.
Figure 2. EDSS progression over time for the ‘progressive from onset’ subgroup in the MSBase Registry. (Brown line illustrates a hypothetical patient’s EDSS scores at two time points).
Conclusions
The clinical course of MS is likely to change in coming years, with improvements in outcomes anticipated with the expansion of therapeutic options. This online tool produces an instant comparison of MS severity for an individual patient using a regularly-updated international cohort of MS patients. We encourage MS neurologists to use this tool to assess an individual’s MS severity and delineate disease progression over time.
Results
In our dataset, median time to EDSS 3.5 was 20 years after MS onset in the ‘relapse-onset’ subgroup (figure 1). Relapse-onset patients who reached an EDSS of 6 at 15 years duration reflected those with the most aggressive disease (87th percentile). We have utilised this tool to compare MS severity in the MSBase dataset with published data from the London, Ontario cohort.1 In our dataset, those with ‘progressive from onset’ MS reached EDSS 6 at a median of 15 years (figure 2). This differs from the London cohort, in which median time to DSS 6 was 4.51 years for the progressive from onset group or around 8 years in their more recent study of primary progressive MS.
Disclosures
The MSBase Registry is operated by the independent MSBase Foundation, a non profit organisation based in Melbourne, Australia. It receives support in the form of grants from Merck Serono, Biogen Idec, Novartis Pharma, Bayer Schering Pharma and Sanofi.
References:
1. Weinshenker, B et al. Brain Dec;112: