Consensus-based care recommendations for adults with myotonic dystrophy type 2 - Archive ouverte HAL
Article Dans Une Revue Neurology: Clinical Practice Année : 2019

Consensus-based care recommendations for adults with myotonic dystrophy type 2

Benedikt Schoser
  • Fonction : Auteur
Federica Montagnese
  • Fonction : Auteur
Barbara Fossati
  • Fonction : Auteur
Josep Gamez
  • Fonction : Auteur
Chad Heatwole
  • Fonction : Auteur
James Hilbert
  • Fonction : Auteur
Cornelia Kornblum
  • Fonction : Auteur
Anne Kostera-Pruszczyk
  • Fonction : Auteur
Ralf Krahe
  • Fonction : Auteur
Anna Lusakowska
  • Fonction : Auteur
Giovanni Meola
  • Fonction : Auteur
Richard Moxley
  • Fonction : Auteur
Charles Thornton
  • Fonction : Auteur
Bjarne Udd
  • Fonction : Auteur
Paul Formaker
  • Fonction : Auteur

Résumé

Purpose of review Myotonic dystrophy type 2 (DM2) is a rare, progressive multisystem disease particularly affecting the skeletal muscle. A causal therapy is not yet available; however, prompt, appropriate symptomatic treatments are essential to limit disease-related complications. Evidence-based guidelines to assist medical practitioners in the care of DM2 patients do not exist. Recent findings The Myotonic Dystrophy Foundation (MDF) previously worked with an international group of 66 clinicians to develop consensus-based care recommendations for myotonic dystrophy type 1. Following a similar approach, the MDF recruited 15 international clinicians with long-standing experience in the care of DM2 patients to develop consensus-based care recommendations. The single text procedure was adopted. This process generated a 4-page Quick Reference Guide and a comprehensive 55-page document that provides care recommendations for DM2 patients. Summary The resulting recommendations will help standardize and improve care for DM2 patients and facilitate appropriate management in centers without neuromuscular specialists.

Dates et versions

hal-03875193 , version 1 (28-11-2022)

Identifiants

Citer

Benedikt Schoser, Federica Montagnese, Guillaume Bassez, Barbara Fossati, Josep Gamez, et al.. Consensus-based care recommendations for adults with myotonic dystrophy type 2. Neurology: Clinical Practice, 2019, 9 (4), pp.343-353. ⟨10.1212/CPJ.0000000000000645⟩. ⟨hal-03875193⟩
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