NZ Neuromuscular Disease Registry

Welcome to the New Zealand Neuromuscular Disease Registry

Recent scientific and medical advances have led to substantial changes in the treatment of many neuromuscular disorders. New therapeutic strategies are being developed and, for some of these treatments, plans for large studies involving participants from more than one country are already in place.

The New Zealand neuromuscular disorders community has undertaken to develop registries to collate a patient's genetic diagnosis and key clinical information about their disease. The NZ NMD Registry received ethics approval and was launched in September 2011. 

To view the NZ NMD Registry's progress click here.

Purpose

The NZ NMD Registry provides an important enabling tool for clinicians and clinical trial sponsors to quickly identify participants suitable for each study, particularly those therapeutic strategies that target specific genetic defects. Potentially eligible participants will be informed about new trials and studies though the Registry's network.

If you are a researcher interested in collaborating with the NZ NMD Registry then email the Registry Curator registry@mda.org.nz or download the Expression of Interest form and return to the Registry Curaotr at the address below.

Objectives

To improve care of people with neuromuscular disorders by lowering barriers to research.

To improve opportunities for international collaboration by facilitating and accelerating the recruitment process of New Zealand NMD participants in studies for the benefit of the global neuromuscular community and for the advancement of science.

Anyone with a neuromuscular disorder living in New Zealand is eligible to take part click here for the list of conditions covered by the NZ NMD Registry.

The information you provide will be stored securely and confidentially in the NZ NMD registry. No unauthorised people will be able to gain access to any information held about you on the registry.

For the Registry Participant Information Sheet click here

For the Registry Information Sheet for Children click here

For the Registry Consent and Registration form click here

Please post the completed forms to:

NZ NMD Registry

Neurology

Auckland City Hospital

Private Bag 92024, Auckland Mail Centre, 1142

For more information on the New Zealand Neuromuscular Disease Registry, please contact the Registry Curator registry@mda.org.nz or 027 468 8044

The NZ Neuromuscular Disease Registry is an MDA initiative generously funded by the Richdale Charitable Trust and supported by the Neuromuscular Research Foundation Trust.

 

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