Building a quality
cohort

The widest in the world:

The DM-Scope concept collected data from more than 2800 French patients with myotonic dystrophies. (myo
tonic dystrophy Type 1 or Steinert and type 2 or PROMM).

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.

La Dystrophie Myotonique est présente dans toutes les régions françaises, à une ou deux exceptions près. Sur cette page, vous trouverez quelques données chiffrées avec le nombre de personnes atteintes, leurs âges etc ... Et les 12 projets que DM-Scope a adossés afin de vaincre cette maladie.

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
fini
A fine understanding of cognitive disorders and the theory of the mind in children DM1
fini
Characterization of personality traits common to adult patients DM1
en cours
Description of hearing disorders in the DM2
en cours
Characterization of retinal impairment in the DM1
en cours
Prevention
Consequences of early management of respiratory impairment in the DM1
en cours
Observational studies
Validate tools and measurement criteria
Measurement criteria
For the evolution of muscular impairment
fini
Related to cognitive impairment
en cours
Assessment Scales
Quality of life
en cours
Monitoring the evolution of muscular impairment
en cours
Basic research Projects
Identify new therapeutic pathways
Protective factors
Monitoring the evolution of muscular impairment
en cours
Clinical trials
Identify new therapeutic pathways
Cognitive therapy
Combating fatigue, lack of initiative and social isolation
fini
Close Menu