Taylor, BV and Palmer, A and Simpson Jr, S and Lucas, R and Simmons, RD and Mason, D and Pearson, J and Clarke, G and Sabel, C and Willoughby, E and Richardson, A and Abernethy, D, NZMSPS study group, Assessing possible selection bias in a national voluntary MS longitudinal study in Australia, Multiple Sclerosis, 19, (12) pp. 1627-1631. ISSN 1352-4585 (2013) [Refereed Article]
Copyright 2013 Sage Publications
Background: Surveying volunteer members of a multiple sclerosis registry is a very cost-effective way of assessing the impact of the disease on life outcomes. However, whether the data from such a study can be generalised to the whole population of persons living with MS in a country or region is unclear.
Methods: Here we compare the demographic and disease characteristics of participants in one such study, the Australian Multiple Sclerosis Longitudinal Study (AMSLS), with two well-characterised MS prevalence studies with near-complete ascertainment of MS in their study regions.
Results: Although some differences were found, these largely represented the effects of geography (sex ratios) and local factors (national immunomodulatory therapy prescribing requirements), and the cohorts were otherwise comparable. Overall, despite comprising only 12-16% of MS cases in Australia, the AMSLS is highly representative of the MS population.
Conclusions: Therefore with some minor caveats, the AMSLS data can be generalised to the whole Australasian MS population. Volunteer disease registries such as this can be highly representative and provide an excellent convenience sample when studying rare conditions such as MS.
|Item Type:||Refereed Article|
|Keywords:||outcome measurement, multiple sclerosis, study design|
|Research Division:||Biomedical and Clinical Sciences|
|Research Field:||Central nervous system|
|Objective Group:||Clinical health|
|Objective Field:||Clinical health not elsewhere classified|
|UTAS Author:||Taylor, BV (Professor Bruce Taylor)|
|UTAS Author:||Palmer, A (Professor Andrew Palmer)|
|UTAS Author:||Simpson Jr, S (Dr Steve Simpson JR)|
|Web of Science® Times Cited:||31|
|Deposited By:||Menzies Institute for Medical Research|
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