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