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Review
. 2019 Aug;9(4):343-353.
doi: 10.1212/CPJ.0000000000000645.

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

Benedikt Schoser  1 , Federica Montagnese  1 , Guillaume Bassez  1 , Barbara Fossati  1 , Josep Gamez  1 , Chad Heatwole  1 , James Hilbert  1 , Cornelia Kornblum  1 , Anne Kostera-Pruszczyk  1 , Ralf Krahe  1 , Anna Lusakowska  1 , Giovanni Meola  1 , Richard Moxley 3rd  1 , Charles Thornton  1 , Bjarne Udd  1 , Paul Formaker  1 ; Myotonic Dystrophy Foundation
Affiliations
Review

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

Benedikt Schoser et al. Neurol Clin Pract. 2019 Aug.

Abstract

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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References

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