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%
OR
  • 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 susan.meyer@nationwidechildrens.org.