Australian National Myotonic Dystrophy Registry

Information

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.

Objectives

  • To improve care of DM1 patients through the coordination of diagnosis and therapy and by ensuring new intervention strategies are available in an equitable and consistent manner across Australia
  • To improve opportunities for international collaboration by facilitating and accelerating the recruitment process of Australian DM1 patients into new clinical trials and for participating in studies for the benefit of the world DM1 community and the advancement of medical science.

 

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.

Registry LocationAustralia
Registry ParticipationVoluntary
Registry Contact

E: DM1 registry – Australia

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

nmdregistry.com.au

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