#MSBlog A new prognostic calculator for MS disease progression. Why is it not open-access?
BACKGROUND AND PURPOSE: The Evidence-Based Decision Support Tool in Multiple Sclerosis (EBDiMS) is the first Web-based prognostic calculator in multiple sclerosis (MS) capable of delivering individualized estimates of disease progression. It has recently been extended to provide long-term predictions based on the data from a large natural history cohort.
METHODS: We compared the predictive accuracy and consistency of EBDiMS with that of 17 neurologists highly specialized in MS.
RESULTS: We show that whilst the predictive accuracy was similar, neurologists showed a significant intra-rater and inter-rater variability.
CONCLUSIONS: Because EBDiMS was consistent, it is of superior utility in a specialist setting. Further field testing of EBDiMS in non-specialist settings, and investigation of its usefulness for counselling patients in treatment decisions, is warranted.
"This tool is very important and will help you, as a person with MS, get an idea of your prognosis. It is a great pity that the new tool is not accessible for all to use. When I went onto the Sylvia Lawry Centre's website to access the tool I was asked to log in! Why? Surely this should be open-access? You can register a protest vote on the poll below."
"I note that the SLC's individual risk calculator is still active. You may want to try it. You Simply enter your baseline details using the website and get a read-out of your predicted course. The database works by pulling out the 30 MSers in the database that are similar to you and calculating their average course. The print-outs below are therefore an average and have wide confidence intervals around the mean or average. I would be interested to get your feedback on the information this calculator provides. Is it helpful to you?"
|EDSS 6 = using a walking stick|
Labels: EDSS, Predicting MS, Sylvia Lawry Centre, web calculator