Journal article
Consensus statement on standard of care for congenital myopathies
CH Wang, JJ Dowling, K North, MK Schroth, T Sejersen, F Shapiro, J Bellini, H Weiss, M Guillet, K Amburgey, S Apkon, E Bertini, C Bonnemann, N Clarke, AM Connolly, B Estournet-Mathiaud, D Fitzgerald, JM Florence, R Gee, J Gurgel-Giannetti Show all
Journal of Child Neurology | SAGE PUBLICATIONS INC | Published : 2012
Abstract
Recent progress in scientific research has facilitated accurate genetic and neuropathological diagnosis of congenital myopathies. However, given their relatively low incidence, congenital myopathies remain unfamiliar to the majority of care providers, and the levels of patient care are extremely variable. This consensus statement aims to provide care guidelines for congenital myopathies. The International Standard of Care Committee for Congenital Myopathies worked through frequent e-mail correspondences, periodic conference calls, 2 rounds of online surveys, and a 3-day workshop to achieve a consensus for diagnostic and clinical care recommendations. The committee includes 59 members from 10..
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Awarded by National Institute of Arthritis and Musculoskeletal and Skin Diseases
Funding Acknowledgements
The authors disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This project is supported by grants from A Foundation Building Strength (www.buildingstrength.org) and TREAT-NMD (www.treat-nmd.edu).