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OpenTrials
Completed

NCT Number: NCT00622453

Arrhythmias in Myotonic Muscular Dystrophy

Adult myotonic muscular dystrophy (Steinert's disease) is the most common inherited neuromuscular disorder. Cardiac rhythm disturbances occur frequently in this disease state and may be responsible for up to one-third of deaths. In this study, we intend to evaluate the utility of non-invasive electrocardiographic screening methods and history in predicting serious arrhythmic events.

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Key information

Conditions

Muscular Dystrophy Arrhythmia Arrhythmias, Cardiac Cardiovascular Diseases Congenital, Hereditary, and Neonatal Diseases and Abnormalities Death Death, Sudden Death, Sudden, Cardiac Genetic Diseases, Inborn Heart Arrest Heart Diseases Muscular Diseases Muscular Disorders, Atrophic Muscular Dystrophies Musculoskeletal Diseases Nervous System Diseases Neuromuscular Diseases Pathologic Processes Pathological Conditions, Signs and Symptoms Sudden Cardiac Death

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Krannert Institute of Cardiology

Indianapolis, Indiana, 46202, United States

About this study

The long term objectives of this population study is a more defined natural history, optimal diagnostic testing methodology, and methods of therapy for arrhythmias in individuals with myotonic muscular dystrophy. The goal is a more adequate definition of appropriate diagnosis and therapy for arrhythmias in order to decrease the likelihood of cardiac morbidity and mortality in this disorder.

The specific aims of the study involve an initial survey of individuals with myotonic muscular dystrophy detailing multiple factors. Non-invasive electrocardiographic testing will be done. Using this initial data and subsequent follow-up data collected yearly the cohort of patients will be followed as to arrhythmia development over a minimum of five years and likely longer with a long-term registry and evaluation of National Death Records and Ancestry.com. This project is unique in that it characterizes a non-neurologic abnormality associated with a neuromuscular disease, myotonic muscular dystrophy.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • Age 18 and over
  • Willing to sign informed consent
  • Have a previous diagnosis of myotonic muscular dystrophy

Exclusion criteria

  • Under age 18.
  • Unwilling to sign consent.
  • Unwilling to commit to long-term follow-up.

Treatment and study plan

Screening

Other

Electrocardiography Blood Test

Other names: ECG, Holter Monitor, Blood Test

Primary outcomes

  1. Evaluate incidence of arrhythmias in myotonic muscular dystrophy

    Time frame: 3 years

Secondary outcomes

  1. Evaluate with diagnostic non-invasive electrocardiogram (ECG)

    Time frame: 3 Years

Sponsors and collaborators

Lead sponsor

Indiana University

Other

Collaborators

  • Muscular Dystrophy Association

Registry information

Official study title

A Registry of Arrhythmias in Myotonic Muscular Dystrophy

Acronym: DM1

Important dates

Study start
1996
Primary completion
2006
Study completion
2015
First posted
Feb 25, 2008
Registry last updated
Feb 14, 2018

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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