Outcome Measures for Myotonic Dystrophy

30 Nov 2011

Clearwater Beach, Florida, US

Outcome Measures in Myotonic Dystrophy type 1 meeting (OMMYD-1)

A satellite meeting will be held prior to the IDMC-8 meeting on Wednesday November 30th. The goal of the meeting is to pursue the work on defining preliminary core sets of outcome domains to be recommended for longitudinal studies and potentially randomized controlled trials in DM1. This meeting will attempt to work on six different outcome domains related to DM1:

  1. Quality of life
  2. Upper extremity function
  3. Lower extremity function
  4. Muscle function
  5. Functional autonomy
  6. Cognitive function

Six working groups will be assembled for the meeting. The expert consensus conference will be based on the process developed in the rheumatology field for the selection of domains and outcome measures for clinical trials called OMERACT.

This satellite meeting is funded by the Association Française contre les Myopathies (AFM) and the Marigold Foundation. For more information, please contact Cynthia Gagnon, PhD, researcher at the GRIMN, Saguenay Neuromuscular Clinic, Université de Sherbrooke, and head organizer of the OMMYD-1 conference at cynthia.gagnon4@usherbrooke.ca

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