DM1 Heart Registry - DM1 Respiratory Registry

Myotonic dystrophy type 1 (DM1) is the most frequent neuromuscular disease in adults. DM1 patients have an impaired prognosis (mean age of death <60 years) due to cardiac and respiratory complications.

Our primary objective was to identify cardiac and respiratory prognostic factors in DM1.

Completed

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Key information

Conditions

Myotonic Dystrophy Congenital, Hereditary, and Neonatal Diseases and Abnormalities Death Death, Sudden Genetic Diseases, Inborn Heredodegenerative Disorders, Nervous System Muscular Diseases Muscular Disorders, Atrophic Muscular Dystrophies Musculoskeletal Diseases Myotonic Disorders Nervous System Diseases Neurodegenerative Diseases Neuromuscular Diseases Pathologic Processes Pathological Conditions, Signs and Symptoms Respiration Disorders Respiratory Insufficiency Respiratory Tract Diseases

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Pitié Salpêtrière Hospital

Paris, Île-de-France Region, 75013, France

About this study

Patients with genetically proven DM1 who were admitted in Pitié Salpêtrière Hospital from 2000 and 2010 will be identified. These patients systematically underwent neurological, cardiac and respiratory investigations.
Baseline medical and genetic information will be entered in a dedicated database, including cardiac and respiratory investigations.
The occurence of severe cardiac and respiratory adverse events will also be collected.
Statistical analysis will be performed to look for correlations between baseline patient characteristics and cardiac or respiratory adverse events during follow up.

Who can participate

Healthy volunteers accepted: No

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

Inclusion criteria

DM1 mutation (>50 CTG repeats)
Age > 18 years

Exclusion criteria

Patient refusal

Sponsors and collaborators

Lead sponsor

Institut de Myologie, France

Other

Registry information

Official study title

Cardiac and Respiratory Prognostic Factors in Patients With Myotonic Dystrophy Type 1

Acronym: DM1-Heart-R

Important dates

Study start: 2010
Primary completion: 2011
Study completion: 2011
First posted: Jun 3, 2010
Registry last updated: Feb 20, 2012

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.

Published trials that share one or more normalized conditions with this study.

Completed