The Need for Respiratory Guidelines
Due to the multisystemic nature of myotonic dystrophy type 1 (DM1), the studies and rigorous evidence needed to drive the creation of an evidence-based guideline for the respiratory clinical care of myotonic dystrophy patients were not available. In order to improve and standardize care for DM1, 12 leading DM1 pulmonologists in Western Europe, the UK, Canada, and the US joined together to create the Consensus-based Care Recommendations for Pulmonologists Treating Adults with Myotonic Dystrophy Type 1. The project was organized and supported by Myotonic.
To promote the development of pulmonary care guidelines for myotonic dystrophy, Myotonic solicited the input of care experts and organized the drafting of these recommendations. A group of neuromuscular experts in DM1 including pulmonologists, respiratory physiotherapists and sleep specialists created the Consensus-based Care Recommendations for Pulmonologists Treating Adults with Myotonic Dystrophy Type 1 through an iterative process. All authors contributed content to create the first draft and leading author Valeria Sansone, M.D., Ph.D. was in charge of managing further editing cycles. The process began in 2017 and concluded in April 2020, with the article published on Respiration’s website on 4/17/20 and in print in Volume 99, Number 4.
Share this with your Pulmonologist
During the COVID-19 Pandemic, please be sure to share the Respiratory Care Recommendations for Myotonic Dystrophy Patients During the COVID-19 Pandemic with your doctor as well!
You can access the full article online via Respiration and Karger Publishers at https://www.karger.com/Article/Abstract/505634.
If you would like a hard copy of the article or the guidelines mailed to you, please email Leah.Hellerstein@myotonic.org with your mailing address.