Research Institution: University of Nevada

Principle Investigator: 
Scott Baker, Melbourne, Victoria, Australia
Alistair Corbett, Sydney, NSW, Australia
Baziel van Engelen, Nijmegen, The Netherlands
Stephen McNamara, Sydney, NSW, Australia
Jean K Mah, Calgary, Alberta, Canada
Monique M Ryan, Melbourne, Victoria, Australia
John Rasko, Sydney, NSW, Australia
Veena Raykar, Sydney, NSW, Australia
Sabrina Sacconi, Nice, France
Stephen J Tapscott, Seattle, Washington, USA
Rabi Tawil, Rochester, New York, USA
Kathryn R Wagner, Baltimore, Maryland, USA
Alan Watts, Sydney, NSW, Australia

Type: Collaboration

Project title: “FSHD Consensus”

Status: Completed


FSHD Global Research Foundation convened a workshop of international experts to discuss practical aspects of the clinical management of patients with facioscapulohumeral muscular dystrophy (FSHD). Participating in the meeting were 11 physicians from academic centers representing Australia, Canada, France, the Netherlands, and the USA, who met on 21 September 2015. The aim of the meeting was to expand on the recently published American Academy of Neurology (AAN) evidence-based guidelines [1], considering practice points covering areas of the care of patients with FSHD for which there is limited evidence, such as evolving genetic diagnostic techniques, lifestyle management, physical therapy, bone health, respiratory and extramuscular complications, and surgical options for palliative therapy. Investigational diseasemodifying agents and patient registries were also discussed.

From this, FSHD Global has created a set of free and accessible educational tool kits for people living with FSHD and health care providers.

Download and share:

Clinical Consensus on Diagnosis & Management

A guide for people living with FSHD

A resource for primary care

A guide for Allied Health Professionals