Pūnaha Io – the New Zealand Neuro-Genetic Registry & BioBank
Welcome to Pūnaha Io Neuro-Genetic Registry & BioBank – providing opportunities for people with neuromuscular conditions to participate in research since 2011
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.
Linking you with Research Opportunities
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.
Click here for the list of conditions covered by MDANZ.
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.
Registry Participant Information Sheet DOWNLOAD
Registry Registration Form DOWNLOAD
Registry Consent Form DOWNLOAD
Please post the completed forms to:
Pūnaha Io Neuro-Genetic Registry & BioBank
Neurology – Auckland City Hospital
Private Bag 92024, Auckland Mail Centre 1142\
A Resource for Researchers
Pūnaha Io Neuro-Genetic Registry & BioBank is an important resource for researchers & clinicians and clinical trial sponsors to quickly identify suitable participants, particularly for those therapeutic strategies that target specific genetic defects.
To read the journal article published in the Journal of Neuromuscular Diseases, titled “The New Zealand Neuromuscular Disease Patient Registry; Five Years and a Thousand Patients” please click here and to view a summary poster click here.
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: firstname.lastname@example.org
Pūnaha Io Neuro-Genetic Registry & BioBank has Health & Disability Ethics Committee approval #NTX/11/02/003