Validating the portal population of the United Kingdom Multiple Sclerosis Register.

2.50
Hdl Handle:
http://hdl.handle.net/11287/620739
Title:
Validating the portal population of the United Kingdom Multiple Sclerosis Register.
Authors:
Middleton, R M [et al] inc.; Harrower, Timothy
Abstract:
The UK Multiple Sclerosis Register (UKMSR) is a large cohort study designed to capture 'real world' information about living with multiple sclerosis (MS) in the UK from diverse sources. The primary source of data is directly from people with Multiple Sclerosis (pwMS) captured by longitudinal questionnaires via an internet portal. This population's diagnosis of MS is self-reported and therefore unverified. The second data source is clinical data which is captured from MS Specialist Treatment centres across the UK. This includes a clinically confirmed diagnosis of MS (by Macdonald criteria) for consented patients. A proportion of the internet population have also been consented at their hospital making comparisons possible. This dataset is called the 'linked dataset'. The purpose of this paper is to examine the characteristics of the three datasets: the self-reported portal data, clinical data and linked data, in order to assess the validity of the self-reported portal data. The internet (n = 11,021) and clinical (n = 3,003) populations were studied for key shared characteristics. We found them to be closely matched for mean age at diagnosis (clinical = 37.39, portal = 39.28) and gender ratio (female %, portal = 73.1, clinical = 75.2). The Two Sample Kolmogorov-Smirnov test was for the continuous variables to examine is they were drawn from the same distribution. The null hypothesis was rejected only for age at diagnosis (D = 0.078, p < 0.01). The populations therefore, were drawn from different distributions, as there are more patients with relapsing disease in the clinical cohort. In all other analyses performed, the populations were shown to be drawn from the same distribution. Our analysis has shown that the UKMSR portal population is highly analogous to the entirely clinical (validated) population. This supports the validity of the self-reported diagnosis and therefore that the portal population can be utilised as a viable and valid cohort of people with Multiple Sclerosis for study.
Citation:
Validating the portal population of the United Kingdom Multiple Sclerosis Register. 2018, 24:3-10 Mult Scler Relat Disord
Publisher:
Elsevier
Journal:
Multiple sclerosis and related disorders
Issue Date:
25-May-2018
URI:
http://hdl.handle.net/11287/620739
DOI:
10.1016/j.msard.2018.05.015
PubMed ID:
29860199
Additional Links:
https://linkinghub.elsevier.com/retrieve/pii/S2211-0348(18)30176-7
Type:
Journal Article
Language:
en
ISSN:
2211-0356
Appears in Collections:
Neurology; 2018 RD&E publications

Full metadata record

DC FieldValue Language
dc.contributor.authorMiddleton, R M [et al] inc.en
dc.contributor.authorHarrower, Timothyen
dc.date.accessioned2018-07-04T13:58:23Z-
dc.date.available2018-07-04T13:58:23Z-
dc.date.issued2018-05-25-
dc.identifier.citationValidating the portal population of the United Kingdom Multiple Sclerosis Register. 2018, 24:3-10 Mult Scler Relat Disorden
dc.identifier.issn2211-0356-
dc.identifier.pmid29860199-
dc.identifier.doi10.1016/j.msard.2018.05.015-
dc.identifier.urihttp://hdl.handle.net/11287/620739-
dc.description.abstractThe UK Multiple Sclerosis Register (UKMSR) is a large cohort study designed to capture 'real world' information about living with multiple sclerosis (MS) in the UK from diverse sources. The primary source of data is directly from people with Multiple Sclerosis (pwMS) captured by longitudinal questionnaires via an internet portal. This population's diagnosis of MS is self-reported and therefore unverified. The second data source is clinical data which is captured from MS Specialist Treatment centres across the UK. This includes a clinically confirmed diagnosis of MS (by Macdonald criteria) for consented patients. A proportion of the internet population have also been consented at their hospital making comparisons possible. This dataset is called the 'linked dataset'. The purpose of this paper is to examine the characteristics of the three datasets: the self-reported portal data, clinical data and linked data, in order to assess the validity of the self-reported portal data. The internet (n = 11,021) and clinical (n = 3,003) populations were studied for key shared characteristics. We found them to be closely matched for mean age at diagnosis (clinical = 37.39, portal = 39.28) and gender ratio (female %, portal = 73.1, clinical = 75.2). The Two Sample Kolmogorov-Smirnov test was for the continuous variables to examine is they were drawn from the same distribution. The null hypothesis was rejected only for age at diagnosis (D = 0.078, p < 0.01). The populations therefore, were drawn from different distributions, as there are more patients with relapsing disease in the clinical cohort. In all other analyses performed, the populations were shown to be drawn from the same distribution. Our analysis has shown that the UKMSR portal population is highly analogous to the entirely clinical (validated) population. This supports the validity of the self-reported diagnosis and therefore that the portal population can be utilised as a viable and valid cohort of people with Multiple Sclerosis for study.en
dc.language.isoenen
dc.publisherElsevieren
dc.relation.urlhttps://linkinghub.elsevier.com/retrieve/pii/S2211-0348(18)30176-7en
dc.rightsArchived with thanks to Multiple sclerosis and related disordersen
dc.subjectWessex Classification Subject Headings::Neurologyen
dc.titleValidating the portal population of the United Kingdom Multiple Sclerosis Register.en
dc.typeJournal Articleen
dc.identifier.journalMultiple sclerosis and related disordersen
dc.type.versionPublisheden
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