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

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

Edité par CCSD ; The American Academy of Neurology -

International audience. 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.

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