Building a quality cohort

The widest in the world :

The DM-Scope concept collected data from more than 3000 French patients with myotonic dystrophies.

Territorial coverage:

The registered patients are spread over the whole French territory of metropolitan and overseas.

Broad clinical Coverage:

The cohort includes children and adults, and covers all clinical forms of the disease (from 0 to 77 years).

Quality data:

A collection carried out without bias of recruitment, in accordance with the recommended European “coredataset”, and carried out by the clinicians of the specialized consultations of the centres of reference and skills of rare diseases.

Lean projects

The DM-scope Observatory has already allowed the affiliation of 12 research projects to:

  • Improve the care of the sick.
  • Validate relevant tools and measurement criteria necessary for the evaluation of emerging therapies.
  • Identify new therapeutic pathways.
  • Test new therapies.
OBSERVATIONAL STUDIES
Improve support
New
recommendations
Consequences of facial impairment on relationships to entourage in the DM1
Done
Compréhension fine des troubles cognitifs et de la théorie de l'esprit chez l'enfant DM1
Done
Characterization of personality traits common to adult patients DM1
In progress
Description of hearing disorders in the DM2
In progress
Characterization of retinal impairment in the DM1
In progress
Prevention
Consequences of early management of respiratory impairment in the DM1
In progress
OBSERVATIONAL STUDIES
Validate tools and measurement criteria
Measurement criteria
For the evolution of muscular impairment
Done
Related to cognitive impairmen
In progress
Échelles d'évaluation
Quality of life
In progress
Monitoring the evolution of muscular impairment
In progress
BASIC RESEARCH PROJECTS
Identify new therapeutic pathways
Protective factors
Monitoring the evolution of muscular impairment
In progress
CLINICAL TRIALS
Identify new therapeutic pathways
Cognitive therapy
Combating fatigue, lack of initiative and social isolation
Done
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