Survey Open for People with ALS

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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