New Zealand Neuromuscular Disease Registry (Punaha Io Neurogenetic Research Bank)

Welcome to the NZ NMD Registry – providing opportunities for people with neuromuscular conditions to participate in research since 2011

A patient registry collects information about people who are affected by particular conditions. In anonymous form valuable medical data from the registry will be made available to researchers whose work is ethical and has been approved, thereby accelerating the research.

With the advent of clinical trials for many neuromuscular conditions, patient registries mean that people who may be eligible for certain clinical trials are readily identifiable and can be contacted quickly.

Neuromuscular conditions are rare conditions, so without a patient registry to gather patient details in one place, finding enough patients for a meaningful trial can take years, delaying the testing of potential therapies.

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

Click here to download a brochure on the NZ NMD Registry.