Australian National Myotonic Dystrophy Registry
The Australian National Myotonic Dystrophy (DM1) Registry has been developed to collate a patient’s DM1 gene sequence and clinical information about their disease. The Registry provides an important enabling tool for clinicians and clinical trial sponsors to quickly identify patients suitable for each study, particularly those therapeutic strategies that target specific genetic defects. Potentially eligible patients will be informed about new trials and studies through the Registry’s clinical network.
The Australian National DM1 Registry adheres to the National Health and Medical Research Council’s National Statement, forms part of an international effort led by TREAT-NMD, which brings together patients and specialists working on treatments for neuromuscular (NMD) disorders, and has received approval reference #2010/49 from the Department of Health WA Human Research Ethics Committee.
|Adding New Patients to Registry|
Patients can self-register by completing a consent form. For more information, see contact details on the website.
|Please see the website for more information|