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Dataset Information

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


ABSTRACT:

Introduction

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.

Methods

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.

Results

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 stif

SUBMITTER: Statland JM 

PROVIDER: S-EPMC3233757 | biostudies-literature | 2011 Jul

REPOSITORIES: biostudies-literature