Welcome to the New Zealand Neuromuscular Diseases Registries
Recent scientific and medical advances have lead to substantial changes in the treatment of many neuromuscular diseases (NMD). 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 diseases community have undertaken to develop registries to collate a patient's genetic diagnosis and some key clinical information about their disease. the registries have received ethics approval.
Purpose
The Neuromuscular Disease Registries provide 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 clinical network.
Objectives
To improve care of NMD patients through the coordination of diagnosis and therapy by ensuring new intervention strategies are available on an equitable and consistent manner across New Zealand.
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.
Contact
For more information on the New Zealand Neuromuscular Disease Registry, please contact the Curator at the Muscular Dystrophy Association of New Zealand on 09 815 0247 or 0800 800 337 or email us at registry@mda.org.nz
To access the DMD or SMA Registry click on the boxes below
Click on the links below for more information
