DM1 Heart Registry – DM1 Respiratory Registry

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Brief Title

DM1 Heart Registry - DM1 Respiratory Registry

Official Title

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

Brief Summary

      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.
    

Detailed Description

      1. 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.

        2. Baseline medical and genetic information will be entered in a dedicated database,
           including cardiac and respiratory investigations.

        3. The occurence of severe cardiac and respiratory adverse events will also be collected.

        4. Statistical analysis will be performed to look for correlations between baseline patient
           characteristics and cardiac or respiratory adverse events during follow up.
    


Study Type

Observational




Condition

Myotonic Dystrophy



Publications

* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.

Recruitment Information



Estimated Enrollment

914

Start Date

May 2010

Completion Date

September 2011

Primary Completion Date

September 2011

Eligibility Criteria

        Inclusion Criteria:

          -  DM1 mutation (>50 CTG repeats)

          -  Age > 18 years

        Exclusion Criteria:

          -  Patient refusal
      

Gender

All

Ages

18 Years - N/A

Accepts Healthy Volunteers

No

Contacts

Denis Duboc, MD,PhD, , 

Location Countries

France

Location Countries

France

Administrative Informations


NCT ID

NCT01136330

Organization ID

AFM-13286


Responsible Party

Principal Investigator

Study Sponsor

Institut de Myologie, France


Study Sponsor

Denis Duboc, MD,PhD, Study Director, APHP


Verification Date

February 2012