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Muscle Nerve. 2011 Jul;44(1):30-5. doi: 10.1002/mus.22007.

An interactive voice response diary for patients with non-dystrophic myotonia.

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  • 1Department of Neurology, University of Rochester Medical Center, Rochester, New York, USA.



Non-dystrophic myotonia (NDM) is caused by mutations in muscle chloride and sodium channels. Currently, there is no standardized instrument for documenting symptom frequency and severity in NDM.


Subjects used an automated, interactive, telephone-based voice response diary (IVR) to record frequency and severity of stiffness, weakness, pain, and tiredness once a week for 8 weeks, after their baseline visits.


We describe the IVR and report data on 76 subjects for a total of 385 person-weeks. Overall there were 5.1 calls per subject. Forty-eight subjects called in 5 or more times, and 14 called in 8 times. Stiffness was both the most frequent and severe symptom. Warm-up and handgrip myotonia were associated with higher severity scores for stiffness.


IVR is a convenient technology to allow patient reporting of repeated and real-time symptom frequency and severity, and it is presently being used in a trial of mexiletine in NDM.

Copyright © 2011 Wiley Periodicals, Inc.

[PubMed - indexed for MEDLINE]
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