Author:
Ashizawa Tetsuo,Gagnon Cynthia,Groh William J.,Gutmann Laurie,Johnson Nicholas E.,Meola Giovanni,Moxley Richard,Pandya Shree,Rogers Mark T.,Simpson Ericka,Angeard Nathalie,Bassez Guillaume,Berggren Kiera N.,Bhakta Deepak,Bozzali Marco,Broderick Ann,Byrne Janice L.B.,Campbell Craig,Cup Edith,Day John W.,De Mattia Elisa,Duboc Denis,Duong Tina,Eichinger Katy,Ekstrom Anne-Berit,van Engelen Baziel,Esparis Belen,Eymard Bruno,Ferschl Marla,Gadalla Shahinaz M.,Gallais Benjamin,Goodglick Todd,Heatwole Chad,Hilbert James,Holland Venessa,Kierkegaard Marie,Koopman Wilma J.,Lane Kari,Maas Daphne,Mankodi Ami,Mathews Katherine D.,Monckton Darren G.,Moser David,Nazarian Saman,Nguyen Linda,Nopoulos Peg,Petty Richard,Phetteplace Janel,Puymirat Jack,Raman Subha,Richer Louis,Roma Elisabetta,Sampson Jacinda,Sansone Valeria,Schoser Benedikt,Sterling Laurie,Statland Jeffrey,Subramony S.H.,Tian Cuixia,Trujillo Careniña,Tomaselli Gordon,Turner Chris,Venance Shannon,Verma Aparajitha,White Molly,Winblad Stefan
Abstract
Purpose of reviewMyotonic dystrophy type 1 (DM1) is a severe, progressive genetic disease that affects between 1 in 3,000 and 8,000 individuals globally. No evidence-based guideline exists to inform the care of these patients, and most do not have access to multidisciplinary care centers staffed by experienced professionals, creating a clinical care deficit.Recent findingsThe Myotonic Dystrophy Foundation (MDF) recruited 66 international clinicians experienced in DM1 patient care to develop consensus-based care recommendations. MDF created a 2-step methodology for the project using elements of the Single Text Procedure and the Nominal Group Technique. The process generated a 4-page Quick Reference Guide and a comprehensive, 55-page document that provides clinical care recommendations for 19 discrete body systems and/or care considerations.SummaryThe resulting recommendations are intended to help standardize and elevate care for this patient population and reduce variability in clinical trial and study environments.
Publisher
Ovid Technologies (Wolters Kluwer Health)
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