The epidemiology and clinical features of Neuromyelitis optica spectrum disorder (NMOSD) and MOG antibody related disease (MOGAD) in Gold Coast

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Broadley, Simon

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Sun, Jing

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2023-09-29
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Abstract

Neuromyelitis optica spectrum disorder (NMOSD) and MOG antibody related disease (MOGAD) are two rare antibody-mediated demyelinating diseases of the central nervous system. Of note MOGAD has only been recently distinguished as a separate disease entity, and consequently the available data describing its epidemiological and clinical features is scant. The purpose of this project was to establish the foundation for a future state-wide comparative epidemiological and clinical study of NMOSD and MOGAD. Initially, a pilot study of cases in Gold Coast using a paper survey form was intended. However, during methodological planning, a feasibility analysis determined that the use of an electronic survey form would be far more advantageous. As such, the new primary aim of this project was to develop a highly functional and capable electronic clinical survey tool to collect demographic and clinical information from patients with NMOSD and MOGAD. A survey was successfully built using the REDCap software. This was successfully trialled in a population of 29 cases, which is believed to include all most (if not all) of the NMOSD and MOGAD cases in Gold Coast that are treated in the private sector. The overall recruitment rate was 97% and the overall survey completion rate was 90%. The survey was successfully able to capture and output the key epidemiological and clinical features relevant to demyelinating diseases. Preliminary epidemiological and clinical data was reported descriptively and included in the report entirely for illustrative purposes. The future directions of this research include the completion of a full pilot study of all cases in Gold Coast (pending recruitment of cases from the Gold Coast Hospital and Health Service), and later followed by the execution of the Queensland-wide study.

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Thesis (Masters)

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Master of Medical Research (MMedRes)

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School of Medicine & Dentistry

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The author owns the copyright in this thesis, unless stated otherwise.

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Neuromyelitis optica spectrum disorder (NMOSD)

MOG antibody related disease (MOGAD)

demyelinating diseases

online clinical survey tool

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