Australian National Myotonic Dystrophy Registry

The Australian National Myotonic Dystrophy (DM1) Registry provides Australian families with an opportunity to improve the outcomes of individuals affected by myotonic dystrophy.

The Registry collates a patient’s DM1 gene sequence and clinical information about their disease. The Registry is a tool for clinicians and clinical trial sponsors to quickly identify patients suitable for clinical studies, particularly for 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.

Participation in the Registry is completely voluntary and there is no cost to enrol.

The Australian National DM1 Registry 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.

Please note that the Australian Neuromuscular Disorders Registry is currently undergoing a transition in administration, and is not actively recruiting new registrants at this time. If you/your child(ren) are a current registrant, or a clinician and you have any questions about the Registry, please contact genomics@health.wa.gov.au. If you are not currently registered onto a neuromuscular disorder registry and would like to register yourself or your child(ren), please click here https://www.australiannmdregistry.org.au to register your interest in joining the new Australian Neuromuscular Disease Registry developed by the Murdoch Children’s Research Institute.