Survey Open for People with ALS

by Amy Madsen on Tue, 2013-04-02 15:21

Researchers are conducting an online survey of people with amyotrophic lateral sclerosis that they hope will help them improve symptom management

Article Highlights:
  • Little evidence exists to help physicians determine the best treatments for a number of amyotrophic lateral sclerosis symptoms.
  • An online survey about ALS symptoms, now open to people with the disease, is being conducted by the Neurological Clinical Research Institute at Massachusetts General Hospital (MGH) in Boston — one of five sites in MDA's ALS Clinical Research Network.
  • Results from the survey are expected to help investigators understand which symptoms pose the most difficulties to people with ALS and to prioritize future research that targets ALS symptom management.

An online survey about ALS symptoms, now open to people with amyotrophic lateral sclerosis (ALS), is being conducted by the Neurological Clinical Research Institute at Massachusetts General Hospital (MGH) in Boston. The site is one of five in MDA's ALS Clinical Research Network.

With data generated by the survey, investigators led by neurologist Nazem Atassi at MGH aim to:

  • determine symptom prevalence, severity and treatment success rate of a number of common ALS symptoms; and
  • help CRN sites prioritize future research that targets symptom management for ALS.

Symptom management is one of the most important aspects of ALS patient care, but little scientific evidence exists to inform physicians about how well different symptomatic treatments work, what treatments are most appropriate, and what dosage ranges are the most effective.  

Guidelines released in 2009 by the American Academy of Neurology (AAN) highlighted a need to develop evidence-based and standardized symptom management in ALS for such symptoms as spasticity, cramps, depression, anxiety, insomnia, fatigue, behavior changes and pain.

The survey does not ask for identifying data. It should take approximately 10 minutes to complete; see ALS Symptom Management Survey.

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