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Muscle Diseases

Guidelines – Gap analysis

 

  • Existing
    • DMD (2009) – DMD Care Considerations Working Group diagnosis and management
    • Limb girdle and distal muscular dystrophies (2014) – AAN – diagnosis and management
    • DM1/DM2 (2012) – Best practice guideline on molecular diagnosis
    • DM2 (2010) – ENMC – diagnosis and management
    • FSHD (2015) – AAN – diagnosis and management
    • CMD (2015) – AAN – diagnosis and management
    • DMD corticosteroid treatment (2016) – AAN
    • Two care guidelines for DM1 and DM2 in progress with the American DM MDF foundation (easily adoptable to European situation as many European doctors were involved)
    • Guideline on diagnosis and management in IBM in progress (Rose et al., Delphi process, AGREE)

 

  • Non existing
    • MFM
    • Idiopathic inflammatory myopathies

 

Collaboration with Re-CONNECT via Jens Schmidt and MetabERN via Antonio Toscano and Nadine van de Beek/Ans van der Ploeg

 

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