New Zealand Neuromuscular Disease Registry
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 enrolment progress click here.
Click here to download a brochure on the NZ NMD Registry.
Linking you with research opportunities
Enrolment is voluntary. People residing in New Zealand with a neuromuscular condition covered by MDANZ are encouraged to read the information sheet about the Registry and decide for themselves 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 the NZ NMD registry, 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 NZ NMD Registry staff. If a research opportunity is being planned for which you may be eligible, the NZ NMD Registry will contact you with information about the study. The NZ NMD Registry will never share your contact details with anyone.
If you have any questions about the registry, please fill out the contact form below.
To join today
For the Registry Participant Information Sheetclick here
For the Registry Registration and Consent Formclick here
Please post the completed forms to:
NZ NMD Registry
Neurology
Auckland City Hospital
Private Bag 92024, Auckland Mail Centre, 1142
A resource for researchers
The NZ NMD Registry 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 the NZ NMD Registry please fill out the contact form below.
Contact us
To contact the NZ NMD Registry Curator Miriam Rodrigues, please email: [email protected]