dc.contributor.author |
Walker, Kerry L |
en |
dc.contributor.author |
Rodrigues, Miriam |
en |
dc.contributor.author |
Watson, Beth |
en |
dc.contributor.author |
Reilly, Claire |
en |
dc.contributor.author |
Scotter, Emma |
en |
dc.contributor.author |
Brunton, Heather |
en |
dc.contributor.author |
Turnbull, Janet |
en |
dc.contributor.author |
Roxburgh, Richard |
en |
dc.date.accessioned |
2020-02-13T03:41:02Z |
en |
dc.date.issued |
2019-02 |
en |
dc.identifier.issn |
0967-5868 |
en |
dc.identifier.uri |
http://hdl.handle.net/2292/49998 |
en |
dc.description.abstract |
There are only limited treatments currently available for Motor Neurone Disease, each with modest benefits. However, there is a large amount of research and drug discovery currently underway worldwide. The New Zealand Motor Neurone Disease Registry was established in 2017 to facilitate participation in research and clinical trials, and to aid researchers in planning and recruitment. The NZ MND Registry is an opt in patient registry which collects demographic, contact and clinical data for those who choose to enrol. We report anonymised aggregated data from the first year's enrolment. 12th July 2018, there were 142 participants enrolled in the NZ MND Registry. Participant sex distribution reflects the demographics reported worldwide, but ethnicity is divergent from what is seen in New Zealand overall, with an over-representation of people who identify as New Zealand European. 85.5% of participants are diagnosed with sporadic MND and 6.1% with familial MND. The remainder were participants who have not been diagnosed but have a family history, or positive genetic test for a MND-causing mutation. Levels of disability are reported using ALSFRS-R scores, and show that the majority of participants are within the higher range of the scale. The registry has facilitated entry of patients into three studies to date. The establishment of the NZ MND Registry illustrates a swift launch of a rare disease patient registry. The role of patient registries is an ever changing one, but with clear utility at every point of along the pathway to drug discovery. |
en |
dc.format.medium |
Print-Electronic |
en |
dc.language |
eng |
en |
dc.relation.ispartofseries |
Journal of Clinical Neuroscience |
en |
dc.rights |
Items in ResearchSpace are protected by copyright, with all rights reserved, unless otherwise indicated. Previously published items are made available in accordance with the copyright policy of the publisher. |
en |
dc.rights.uri |
https://researchspace.auckland.ac.nz/docs/uoa-docs/rights.htm |
en |
dc.subject |
Humans |
en |
dc.subject |
Motor Neuron Disease |
en |
dc.subject |
Registries |
en |
dc.subject |
Middle Aged |
en |
dc.subject |
New Zealand |
en |
dc.subject |
Female |
en |
dc.subject |
Male |
en |
dc.title |
Establishment and 12-month progress of the New Zealand Motor Neurone Disease Registry. |
en |
dc.type |
Journal Article |
en |
dc.identifier.doi |
10.1016/j.jocn.2018.11.034 |
en |
pubs.begin-page |
7 |
en |
pubs.volume |
60 |
en |
dc.rights.holder |
Copyright: The author |
en |
pubs.end-page |
11 |
en |
pubs.publication-status |
Published |
en |
dc.rights.accessrights |
http://purl.org/eprint/accessRights/RestrictedAccess |
en |
pubs.subtype |
Review |
en |
pubs.subtype |
Journal Article |
en |
pubs.elements-id |
757184 |
en |
pubs.org-id |
Medical and Health Sciences |
en |
pubs.org-id |
School of Medicine |
en |
pubs.org-id |
Medicine Department |
en |
pubs.org-id |
Science |
en |
pubs.org-id |
Biological Sciences |
en |
dc.identifier.eissn |
1532-2653 |
en |
pubs.record-created-at-source-date |
2018-11-27 |
en |
pubs.dimensions-id |
30473407 |
en |