Establishment and 12-month progress of the New Zealand Motor Neurone Disease Registry.

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Show simple item record Walker, Kerry L en Rodrigues, Miriam en Watson, Beth en Reilly, Claire en Scotter, Emma en Brunton, Heather en Turnbull, Janet en Roxburgh, Richard en 2020-02-13T03:41:02Z en 2019-02 en
dc.identifier.issn 0967-5868 en
dc.identifier.uri 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 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 en
pubs.subtype Review en
pubs.subtype Journal Article en
pubs.elements-id 757184 en Medical and Health Sciences en School of Medicine en Medicine Department en Science en Biological Sciences en
dc.identifier.eissn 1532-2653 en
pubs.record-created-at-source-date 2018-11-27 en
pubs.dimensions-id 30473407 en

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