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
To view the NZ NMD
Registry's progress click here.
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 firstname.lastname@example.org or
download the Expression of
Interest form and return to the Registry Curaotr at the address
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
For the Registry Participant Information Sheet click here
For the Registry Information Sheet for Children click
For the Registry Consent and Registration form click here
Please post the completed forms to:
NZ NMD Registry
Auckland City Hospital
Private Bag 92024, Auckland Mail Centre,
For more information on the New Zealand Neuromuscular Disease
Registry, please contact the Registry Curator email@example.com or
The NZ Neuromuscular Disease Registry is an MDA initiative
generously funded by the Richdale Charitable Trust and supported by
the Neuromuscular Research Foundation Trust.