Our Research
Advancing care, unlocking breakthroughs
Research is the bridge between a diagnosis today and life-changing treatments tomorrow. MDANZ actively invests in local scientific innovation, manages New Zealand’s national patient registry, and connects Kiwi families with international clinical trials.
National patient registry: Connecting members to global clinical trial opportunities
Local research grants: Funding seed projects and clinical research across New Zealand
International alliances: Partnering with global networks like TREAT-NMD to bring care standards home
Why research matters in Aotearoa
Because many neuromuscular conditions are rare, New Zealand researchers and clinicians must work collaboratively with the global scientific community. MDANZ plays a vital role as the central coordinator, ensuring Kiwi patients are not left behind as new gene therapies, disease-modifying drugs, and assistive technologies are developed worldwide.
Our research strategy focuses on three core outcomes:
Accelerating access to treatments: Ensuring New Zealanders are visible and eligible for global clinical trials.
Improving everyday quality of life: Funding practical studies into fatigue management, respiratory support, and physiotherapy.
Strengthening clinical standards: Translating international best-practice guidelines into New Zealand’s health system.
Our core research pillars
NZ Neuromuscular Disease Registry (NZNMDR)
A secure database of Kiwis living with neuromuscular conditions. It allows researchers to quickly identify eligible patients when international clinical trials or local studies open.
Local Research Grants & Fellowships
MDANZ awards targeted grants to New Zealand scientists, neurologists, and allied health professionals conducting innovative research into diagnosis, symptom management, and care.
Global Clinical Trial Networks
Through our affiliation with TREAT-NMD and global patient advocacy bodies, we ensure international pharmaceutical companies consider New Zealand for clinical trial sites.
How members & whānau can participate
You don’t need a medical degree to contribute to research. Your lived experience is one of the most powerful tools scientists have.
Join the NZ Neuromuscular Disease Registry (NZNMDR)
Register your diagnosis securely so you can be notified when relevant clinical trials, natural history studies, or surveys open in NZ.
Participate in surveys & quality-of-life studies
Help researchers understand the real-world impact of living with a condition by contributing to surveys on housing, employment, and care.
Donate to the NZ Neuromuscular Biobank
Provide tissue or blood samples (often during routine procedures) to help scientists study condition genetics and biophysiological markers.