Registry & BioBank
Pūnaha Io – the NZ Neuro-Genetic Registry & BioBank
Providing opportunities for New Zealanders with neuromuscular and neuro-genetic conditions to participate in world-class research since 2011.
Pūnaha Io – the New Zealand Neuro-Genetic Registry & BioBank (formerly the NZ NMD Registry) is a combined patient registry and tissue biobank housed within the Neurology Department at Auckland District Health Board. By linking confidential health data with stored biological samples, Pūnaha Io lowers barriers for Kiwi families to access international clinical trials and emerging therapies.
100% voluntary & confidential
Internationally networked with global clinical trial groups
Single sign-up covering both trial notification and tissue research
Why combine the Registry and BioBank?
Because neuromuscular conditions are rare, gathering patient details and biological data in one central place is essential. Without a combined registry and biobank, finding enough eligible candidates for a clinical trial can take years, delaying life-changing therapies.
The Registry
(Clinical Data)
Stores secure information about your diagnosis, genetic markers, and medical history. This allows researchers to quickly identify if you match the criteria for upcoming clinical trials.
The BioBank
(Biological Samples)
Collects, processes, and stores donated tissue and cells, including blood, muscle, nerve tissue, and cerebrospinal fluid (CSF), for ethically approved scientific studies.
The power of linking both
When registry health data is linked with biobank samples, scientists can study how conditions progress over time and test targeted therapies on specific genetic variations.
Connected to the global scientific community
Pūnaha Io ensures that New Zealand patients are visible on the world stage. Our registry and biobank are internationally networked with leading global research bodies, including:
TREAT-NMD Global Alliance: The global network for neuromuscular patient registries.
Rare Diseases Clinical Research Network (RDCRN)
Critical Path Institute & International Rare Diseases Research Consortium
Cure Huntington's Disease Initiative (CHDI)
How we protect your privacy
Secure hosting: All information and samples are stored securely within the Neurology Department at Auckland District Health Board.
De-identified data: Researchers only see anonymous clinical data and coded samples. Personal details like your name, address, and contact numbers are never shared with outside scientists or pharmaceutical companies.
Direct contact: If a clinical trial opens that matches your profile, Pūnaha Io staff will contact you directly to ask if you’d like to participate. You always remain in full control.
How to enrol in Pūnaha Io
Email the Registry Team: Send an email to neurogenetics@adhb.govt.nz with “Registry” in the subject line.
Include Key Details: In your email, provide your:
• Full Name
• Preferred Phone Number
• Diagnosed Condition (or write “in progress” if you are currently awaiting a diagnosis)Complete Consent: A Pūnaha Io coordinator will reply with your enrollment pack, or you can download and review the official forms below:
Download Pūnaha Io Participant Information Sheet (.PDF)
Download Pūnaha Io Consent Form (.PDF)
Information for Researchers & Trial Sponsors
Pūnaha Io is a key national resource for clinical trial sponsors, academic researchers, and clinicians seeking to identify suitable participants or access ethically banked tissue samples, particularly for therapies targeting specific genetic mutations.
Submit a Study Proposal: All requests to access de-identified data or biobank samples must receive ethical approval and be vetted by the Pūnaha Io Steering Committee.
Contact Coordinators: Email neurogenetics@adhb.govt.nz to discuss feasibility, cohort sizes, or recruitment support.