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Improving MS Symptom Measurement with Research

Posted: Tue Jun 26, 2012 5:16 am
by esnook
Hello-

I am new to ThisIsMS and very excited to see so many people are discussing MS!

My name is Erin Snook. I am a researcher at the University of Massachusetts Amherst and am living with MS. My research focuses on understanding physical activity and exercise behavior in people with MS and in the development of better measures of function and MS symptoms.
My research developing better outcome measures is a direct result of being in the Rebif vs. Copaxone (EVIDENCE) clinical trial and the frustrations that I experience with my MS specialists’ inability to accurately and meaningfully quantify my symptoms and real-world function (not function as measured by a timed 25 ft. walk or a survey). I am in the unique position of having the appropriate research training needed to address many of the problems with the function and symptom outcome measures that are currently being used in clinical trials and by neurologists treating people with MS.

I currently have a grant from the Consortium of Multiple Sclerosis Centers to test a new comprehensive symptom survey and determine how well it is able to measure the severity, frequency, and distressfulness of MS symptoms. This is a voluntary study that can be completed online in 30-45 minutes (study includes the symptom survey and questions about function, disability level, self-efficacy, exercise, and general health). The first 400 participants (meeting the 3 eligibility requirements) will be compensated ($10 gift card) for their time and effort.

Study Eligibility Requirements:
1. Definite MS diagnosis
2. 20-70 years old
3. United States resident

Anyone interested in participating or wanting more information about the study (or me) can:

• Email me: esnook@kin.umass.edu

• Visit the lab website to view an informational video about the study http://blogs.umass.edu/pablab/research/

• Complete the online survey: https://www.assessmentcenter.net/ac1/As ... MSsymptoms

• See a list of my published research articles: http://www.ncbi.nlm.nih.gov/pubmed?term=snook%20em

Your participation in this research is greatly appreciated! This is the first, and most important, study in a series of studies aimed at improving how MS symptoms are assessed.

Erin Snook, PhD
Department of Kinesiology
University of Massachusetts Amherst
130A Totman
30 Eastman Lane
Amherst, MA 01003
413-545-6438
esnook@kin.umass.edu

Follow Me on Twitter: http://www.twitter.com/ACTonMS