Australian Neuromuscular Disorders Registry

Welcome to the Australian Neuromuscular Disorders Registry

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.

Purpose

The NMD 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.

Objectives

To improve care of NMD patients through the coordination of diagnosis and therapy and by ensuring new intervention strategies are available on an equitable and consistent manner across Australia; and

To improve opportunities for international collaboration by facilitating and accelerating the recruitment process of Australian NMD patients into new clinical trials and by participating in studies for the benefit of the world NMD community and the advancement of medical science.

Administration / Oversight

The Australian Neuromuscular Disorders Registry is guided by the Registry Advisory Committee. This committee includes people from patient organisations as well as experts with relevant clinical, academic or scientific knowledge.

The functions of the committee are to guide the development and direction of the Registry and to approve the use of the registry to respond to specific queries from research groups. The Terms of Reference for this committee and the Charter for the Australian NMD Registry are available for your information.