Australian Neuromuscular Disorders Registry

Useful information

TREAT-NMD Global FKRP Registry
A registry exists for people with FKRP-related conditions, please click here for more details or to register on the Global FKRP Registry.
Clinical research projects - national collaborations seeking participation from the ANN community
Summary of TREAT-NMD Enquiries
A summary of the TREAT-NMD enquries received by the NMD Registry in 2013 is available here.
Cardiac Study on Duchenne Muscular Dystrophy
The Heart Center, Nationwide Children’s Hospital, Columbus Ohio are conducting a study into the incidence of sudden cardiac death in people with Duchenne muscular dystrophy (DMD). The study involves collecting clinical history data for 5 years when the patient is aged 10 years or older. The study identifies each participant with a unique code on patients which fulfil the following criteria:
  • Diagnosed with Duchenne muscular dystrophy
  • Aged 10 years and over
  • An LVEF of <= 35%
  • Have a cardiac device (Implantable Cardioverter Defibrillator or pacemaker) inserted

If you are interested in participating please see the attached flyer for the study here. Alternatively please contact the study coordinator on