title: An interactive voice response diary for patients with non-dystrophic myotonia.
abstract: BACKGROUND
  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 stiffness.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Neurology, University of Rochester Medical Center, Rochester, New York, USA.
authors.forename: Jeffrey M
authors.initials: JM
authors.lastname: Statland
authors.forename: Yunxia
authors.initials: Y
authors.lastname: Wang
authors.forename: Rachel
authors.initials: R
authors.lastname: Richesson
authors.forename: Brian
authors.initials: B
authors.lastname: Bundy
authors.forename: Laura
authors.initials: L
authors.lastname: Herbelin
authors.forename: Joe
authors.initials: J
authors.lastname: Gomes
authors.forename: Jaya
authors.initials: J
authors.lastname: Trivedi
authors.forename: Shannon
authors.initials: S
authors.lastname: Venance
authors.forename: Anthony
authors.initials: A
authors.lastname: Amato
authors.forename: Michael
authors.initials: M
authors.lastname: Hanna
authors.forename: Robert
authors.initials: R
authors.lastname: Griggs
authors.forename: Richard J
authors.initials: RJ
authors.lastname: Barohn
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D002648:Child; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008499:Medical Records; D008875:Middle Aged; D009222:Myotonia / Q000473:pathology / Q000523:psychology / Q000628:therapy; D012720:Severity of Illness Index; D013689:Telephone; D014831:Voice; D055815:Young Adult