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dc.contributor.authorWilliams, Louise R
dc.contributor.authorAli, Myzoon
dc.contributor.authorVandenBerg, Kathryn
dc.contributor.authorWilliams, Linda J
dc.contributor.authorAbo, Masahiro
dc.contributor.authorBecker, Frank
dc.contributor.authorBowen, Audrey
dc.contributor.authorBrandenburg, Caitlin
dc.contributor.authorBreitenstein, Caterina
dc.contributor.authorBruehl, Stefanie
dc.contributor.authorCopland, David A
dc.contributor.authorCranfill, Tamara B
dc.contributor.authorDi Pietro-Bachmann, Marie
dc.contributor.authorEnderby, Pamela
dc.contributor.authorFillingham, Joanne
dc.contributor.authoret al.
dc.date.accessioned2021-11-24T00:10:01Z
dc.date.available2021-11-24T00:10:01Z
dc.date.issued2021
dc.identifier.issn0268-7038en_US
dc.identifier.doi10.1080/02687038.2021.1897081en_US
dc.identifier.urihttp://hdl.handle.net/10072/410323
dc.description.abstractBackground: Collation of aphasia research data across settings, countries and study designs using big data principles will support analyses across different language modalities, levels of impairment, and therapy interventions in this heterogeneous population. Big data approaches in aphasia research may support vital analyses, which are unachievable within individual trial datasets. However, we lack insight into the requirements for a systematically created database, the feasibility and challenges and potential utility of the type of data collated. Aim: To report the development, preparation and establishment of an internationally agreed aphasia after stroke research database of individual participant data (IPD) to facilitate planned aphasia research analyses. Methods: Data were collated by systematically identifying existing, eligible studies in any language (≥10 IPD, data on time since stroke, and language performance) and included sourcing from relevant aphasia research networks. We invited electronic contributions and also extracted IPD from the public domain. Data were assessed for completeness, validity of value-ranges within variables, and described according to pre-defined categories of demographic data, therapy descriptions, and language domain measurements. We cleaned, clarified, imputed and standardised relevant data in collaboration with the original study investigators. We presented participant, language, stroke, and therapy data characteristics of the final database using summary statistics. Results: From 5256 screened records, 698 datasets were potentially eligible for inclusion; 174 datasets (5928 IPD) from 28 countries were included, 47/174 RCT datasets (1778 IPD) and 91/174 (2834 IPD) included a speech and language therapy (SLT) intervention. Participants’ median age was 63 years (interquartile range [53, 72]), 3407 (61.4%) were male and median recruitment time was 321 days (IQR 30, 1156) after stroke. IPD were available for aphasia severity or ability overall (n = 2699; 80 datasets), naming (n = 2886; 75 datasets), auditory comprehension (n = 2750; 71 datasets), functional communication (n = 1591; 29 datasets), reading (n = 770; 12 datasets) and writing (n = 724; 13 datasets). Information on SLT interventions were described by theoretical approach, therapy target, mode of delivery, setting and provider. Therapy regimen was described according to intensity (1882 IPD; 60 datasets), frequency (2057 IPD; 66 datasets), duration (1960 IPD; 64 datasets) and dosage (1978 IPD; 62 datasets). Discussion: Our international IPD archive demonstrates the application of big data principles in the context of aphasia research; our rigorous methodology for data acquisition and cleaning can serve as a template for the establishment of similar databases in other research areas.en_US
dc.description.peerreviewedYesen_US
dc.languageEnglishen_US
dc.publisherInforma UK Limiteden_US
dc.relation.ispartofjournalAphasiologyen_US
dc.subject.fieldofresearchClinical sciencesen_US
dc.subject.fieldofresearchNeurosciencesen_US
dc.subject.fieldofresearchHealth informatics and information systemsen_US
dc.subject.fieldofresearchHealth policyen_US
dc.subject.fieldofresearchcode3202en_US
dc.subject.fieldofresearchcode3209en_US
dc.subject.fieldofresearchcode420308en_US
dc.subject.fieldofresearchcode440706en_US
dc.subject.keywordsScience & Technologyen_US
dc.subject.keywordsSocial Sciencesen_US
dc.subject.keywordsLife Sciences & Biomedicineen_US
dc.subject.keywordsAudiology & Speech-Language Pathologyen_US
dc.subject.keywordsLinguisticsen_US
dc.subject.keywordsStrokeen_US
dc.subject.keywordsaphasiaen_US
dc.subject.keywordsindividual participant dataen_US
dc.subject.keywordsrehabilitation reporting standardsen_US
dc.titleUtilising a systematic review-based approach to create a database of individual participant data for meta- and network meta-analyses: the RELEASE database of aphasia after strokeen_US
dc.typeJournal articleen_US
dc.type.descriptionC1 - Articlesen_US
dcterms.bibliographicCitationWilliams, LR; Ali, M; VandenBerg, K; Williams, LJ; Abo, M; Becker, F; Bowen, A; Brandenburg, C; Breitenstein, C; Bruehl, S; Copland, DA; Cranfill, TB; Di Pietro-Bachmann, M; Enderby, P; Fillingham, J; Galli, FL; Gandolfi, M; Glize, B; Godecke, E; Hawkins, N; Hilari, K; Hinckley, J; Horton, S; Howard, D; Jaecks, P; Jefferies, E; Jesus, LMT; Kambanaros, M; Kang, EK; Khedr, EM; Kong, AP-H; Kukkonen, T; Laganaro, M; Ralph, MAL; Laska, AC; Leemann, B; Leff, AP; Lima, RR; Lorenz, A; MacWhinney, B; Marshall, RS; Mattioli, F; Mavis, I; Meinzer, M; Nilipour, R; Noe, E; Paik, N-J; Palmer, R; Papathanasiou, I; Patricio, BF; Martins, IP; Price, C; Jakovac, TP; Rochon, E; Rose, ML; Rosso, C; Rubi-Fessen, I; Ruiter, MB; Snell, C; Stahl, B; Szaflarski, JP; Thomas, SA; Van de Sandt-Koenderman, M; Van der Meulen, I; Visch-Brink, E; Worrall, L; Wright, HH; Brady, MC, Utilising a systematic review-based approach to create a database of individual participant data for meta- and network meta-analyses: the RELEASE database of aphasia after stroke, Aphasiology, 2021en_US
dcterms.licensehttp://creativecommons.org/licenses/by/4.0/en_US
dc.date.updated2021-11-23T23:57:54Z
dc.description.versionVersion of Record (VoR)en_US
gro.rights.copyright© 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.en_US
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gro.griffith.authorBrandenburg, Caitlin


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