Hughes et al. MS Curves: a new online tool for assessing MS severity using the MSBase Registry. ECTRIMS 2012.
Background: The wide heterogeneity in disability for MSers creates a challenge when gauging disease severity. The utility of EDSS ranking at given disease durations, as originally used to devise the MS Severity Score (MSSS), was developed to assess MS severity in the MSBase dataset. This presentation reports 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.
"Pity MSers can't use this tool as well?"
Methods: The MSBase registry is a large international database which tracks long-term outcomes in MS. Using this data, the investigators' 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 their 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 they 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.
Results: In their dataset, median time to EDSS 3.5 was 20 years after MS onset in the ‘relapse-onset’ subgroup. Relapse-onset MSers who reached an EDSS of 6 at 15 years duration reflected those with the most aggressive disease (87th percentile). They have utilised this tool to compare MS severity in the MSBase dataset with published data from the London, Ontario cohort. In their dataset, those with ‘progressive from onset’ MS reached EDSS 6 at a median of 15 years. This differs from the London, Ontario 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.
Conclusion: 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 MSer using a regularly-updated international cohort of MSers. The investigators' encourage MS neurologists to use this tool to assess an individual’s MS severity and delineate disease progression over time.
"Great idea! Big downside is that it does not empower MSers to use the tool without having their neurologist examine them to determine their EDSS! Hopefully, this state of affairs will change in the future when we move away from the EDSS to PROMS (patient or MSer related outcome measures), to measure MS-related disability."
Labels: calculator, MS Severity, MSBase, online