Saturday, October 13, 2012

MS Curves: A Tool to Calculate MS Severity

Julie Stachowiak, PhD
Writer, ms.about.com


We have all heard time after time that MS is an unpredictable disease and that it is impossible to say with any certainty what will happen to people as they live with this disease. However, although I agree that it is difficult to say exactly what will happen to an individual with MS, what if there was data on what has happened to lots and lots of people with MS? From that, one could build a model of what was likely to happen to individuals living with MS.

The MSBase registry is a very large international database containing information about almost 20,000 people living with MS from different countries (to see how many individuals from each country are represented, click here: Patient Enrollment by Country). It is intended to be used by individuals and research centers conducting observational research on people with MS. However, a new online tool has been developed that we can all use.

Called the MS Severity Rank Calculator, this tool allows comparison of an individual's disease severity (as measured by the Expanded Disability Severity Scale, or EDSS) to people who have had MS for the same amount of time. The data in the MSBase registry is updated regularly, so it will reflect the changes in MS disease course over time due to improved diagnostics and uptake of disease-modifying therapy.

You can enter your EDSS scores (or estimated EDSS) at different points after diagnosis and see where you are in terms of disability in relation to other people with MS. In addition, you will be able to see your trajectory of relative disease progression over time, allowing you to have a visual estimate of the course your MS is likely to take.

Check it out by clicking here: MS Severity Rank Calculator.

I was fortunate enough to meet one of the creators of MS Base, Helmut Butzkeuven of Australia. I complimented him on the creation and ease of use of the MS Severity Rank Calculator. I ended by saying, "Wow, if I had that much data at my disposal, I would play with it all day." Without missing a beat, Dr. Butzkeuven replied, "We do."

7 comments:

  1. Doctor run the same question in Canada. How long did it take the Parliament to realize the significant population of patients? Will the United States run the same predicament in the State of Florida? We cannot talk about population when we are not counted. A Prevalence Study of MS at the Commonwealth of Puerto Rico says that the population is significant. What is the MS Society waiting? We have a significant population of Puerto Ricans in Central Florida. We need a Research Official that will not give into the local Politics. The denial of the fact will not benefit Patients, Consumers and Citizens. I am a Patient who was juggle, discriminated and denied Disability Benefits. How can this cirscuntances can benefit Patients?

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  2. La doctora debe hacer las mismas preguntas en Canada. ¿Cuánto tiempo le tomo al Parlamento de darse cuenta de la realidad de la población de pacientes? Sera los Estados Unidos próximos en el Estado de Florida. No podemos ha población cuando no somos contados. Un Estudio de Prevalencia de Esclerosis Múltiple en la Commonwealth de Puerto Rico dice que la población es significante. ¿Qué va hacer la Sociedad Nacional de Esclerosis Múltiple? ¿Qué está esperando? Tenemos una población significante de Puertorriqueños en la Florida Central. Necesitamos un Oficial de que no sea impresionado con la Política Local. La negación del hecho no beneficia a Pacientes, Consumidores y Ciudadanos. Me negaron Beneficios de Discapacidad por doce años. ¿Cómo esta circunstancia puede beneficiar a los Pacientes? Responsabilidad y acción. Ahora mi memoria es afectada. No puedo esperar a más síntomas.

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  3. I thought at first I wasn't tracking... but I think you've posted the home page for MSBase, rather than the MS Curves page which has the MS Severity Calculator. Here's the link I found:

    https://www.msbase.org/msbase/msbase/mscurves

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  4. You'll also have to know how you rank on the EDSS, and how you ranked each year.

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  5. I wanted to ask what the EDSS is and where i get this information. I was diagnosed 4 years ago at the age of 25 and i am always looking for studies and information that may help me get a realistic view of what is to come for me...it has been a very rough 4 years so anyone that can help me understand the EDSS value and help me to use this tool i would be very greatful

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    1. Go to the link below and read over the FSS and the EDSS forms. To help fill out the MS Curve tool discussed here, I found it helpful to write down my wife's FSS scores for each of the 7 categories for each year since her MS started. So for 2005, when her symptoms started, she had FSS scores of 0, 0, 0, 0, 0, 0, 1, and 0. Based on the EDSS form, this means her EDSS score for 2005 was 1.0. Keep doing this for each year until you reach this year, then go try the MS curve tool.

      http://www.nationalmssociety.org/for-professionals/researchers/clinical-study-measures/fss-and-edss/index.aspx

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