Pūnaha Io – the New Zealand Neuro-Genetic Registry & BioBank

The aim of this combined registry and sample collection is to lower the barriers for New Zealanders with neuro-genetic disease to be involved in research and clinical trials.

Formerly known as the NZ NMD Registry, we also aim to support the establishment of best-practice care for neurogenetic patients in Aotearoa-New Zealand, including diagnosis.

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.

Registries are databases containing clinical information about individuals who are affected by a specific condition. In rare disease, they play an important role in the therapy development pathway. Registries can:

•  Identify participants for clinical trials
• Help develop care standards, to help improve the care people receive
• Identify specific research questions
• Provide information for doctors and scientists to learn more about neurogenetic diseases
• Represent a link between patients and the research community, providing the opportunity for people to receive information directly relevant to their condition

Biobanks are a useful research resource. They collect, process and store tissues and cells (including blood, muscle, nerve, and cerebrospinal fluid (CSF)) for ethically approved research studies.

By linking data held in a registry with samples donated and stored in a biobank, a powerful resource is created that can help answer questions about what happens as a participant’s condition progresses over time and can also be used to identify eligible candidates to trial potential therapies.

Pūnaha Io the New Zealand Neuro-Genetic Registry & BioBank is a patient registry and biobank that is internationally networked with the global family of TREAT-NMD patient registries, the Cure Huntington’s Disease Initiative, the Rare Diseases Clinical Research Network, the Critical Path Institute, and the International Rare Diseases Research Consortium.

Enrolment is voluntary. People residing in New Zealand with a neurogenetic condition, including any of the neuromuscular conditions covered by MDANZ, are encouraged to read the information sheet about the Registry & BioBank and decide whether they would like to enrol.

If you  decide to join the registry you will need to sign a consent form. Registry staff may contact you for additional information.

The information you provide as well as clinical and , if applicable, genetic information will be stored securely and confidentially in Pūnaha Io Neuro-Genetic Registry & BioBank, which is housed in the Neurology Department at Auckland District Health Board.  

This information will be used to identify if you are eligible for clinical trials or other research and will be protected and only made available to Pūnaha Io staff. If a research opportunity is being planned for which you may be eligible, the co-ordinators will contact you with information about the study.  Pūnaha Io Neuro-Genetic Registry & BioBank will never share your contact details with anyone.

If you have any questions about the registry & biobank, please contact us below.

Pūnaha Io Neuro-Genetic Registry & BioBank

If you are a researcher interested in collaborating with Pūnaha Io – the New Zealand Neuro-Genetic Registry & BioBank please fill out the contact form below.

To contact the Pūnaha Io Neuro-Genetic Registry & BioBank co-ordinators please email: [email protected]