European Cross-Sectional Survey of Current Care Practices for Duchenne Muscular Dystrophy Reveals Regional and Age-Dependent Differences

• Authors: VRY Julia; GRAMSCH Kathrin; RODGER Sunil; THOMPSON Rachel; STEFFENSEN Birgit F.; RAHBEK Jes; DOERKEN Sam; TASSONI Adrian; BEYTÍA María de los; GUERGUELTCHEVA Velina; CHAMOVA Teodora; TOURNEV Ivailo; KOSTERA-PRUSZCZYK Anna; KAMINSKA Anna; LUSAKOWSKA Anna; MRÁZOVÁ Lenka; MOKRÁ Lenka; STRENKOVÁ Jana; VONDRÁČEK Petr; GARAMI Marta; KARCAGI Veronika; HERCZEGFALVI Ágnes; BUSHBY katherine; LOCHMÜLLER Hanns; KIRSCHNER Janbernd
• Year of publication: 2016
• Type: Article in Periodical
• Magazine / Source: Journal of Neuromuscular Diseases
• MU Faculty or unit: Faculty of Medicine
• Doi: http://dx.doi.org/10.3233/JND-160185
• Field: Neurology, neurosurgery, neurosciences
• Keywords: Duchenne muscular dystrophy; standards of care; corticosteroid treatment; functional status
• Description: Publication of comprehensive clinical care guidelines for Duchenne muscular dystrophy (DMD) in 2010 was a milestone for DMD patient management. Our CARE-NMD survey investigates the neuromuscular, medical, and psychosocial care of DMD patients in Europe, and compares it to the guidelines.