How Do Neuromuscular Disorders Affect People's Lives?

Researchers at the University of Michigan are conducting an anonymous, online survey to probe patients' impressions of the impact of their neuromuscular conditions

Article Highlights:
  • Pain, depression, fatigue, sleep abnormalities and cognitive problems have been reported by people with various genetic neuromuscular disorders.
  • An online survey is being conducted to find out more.
by Margaret Wahl on May 1, 2014 - 10:22am

Update May 21, 2014: According to investigator Sindhu Ramchandren, 922 people had responded to this survey as of May 19, 2014. The study was closed to new participants at 5 p.m. EDT that day. At the investigator's request, the link to the online survey has been removed. Results will be announced when they become available.

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original story:

Researchers at the University of Michigan are interested in collecting patients' impressions of how genetic neuromuscular disorders affect their lives, particularly with respect to pain, depression, fatigue, sleep abnormalities and cognitive problems.

A questionnaire-based study to probe these impressions is underway under the direction of Sindhu Ramchandren, assistant professor of neurology at the University of Michigan in Ann Arbor and co-director of MDA's neuromuscular disease clinic at that institution. (MDA is not, however, directly involved with this study.)

To participate

If you're an adult who has been diagnosed with a genetic neuromuscular disorder (most of the diseases in MDA's program are in this category), you're invited to participate. Your responses are anonymous, and there are no costs to taking part in this survey, which should take you about 20 minutes to complete.

 

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