Williams, Louise R., Ali, Myzoon ORCID: 0000-0001-5899-2485, VandenBerg, Kathryn ORCID: 0000-0001-5035-9650, Williams, Linda J., Abo, Masahiro ORCID: 0000-0001-6701-4974, Becker, Frank ORCID: 0000-0002-0857-0628, Bowen, Audrey ORCID: 0000-0003-4075-1215, Brandenburg, Caitlin ORCID: 0000-0002-6992-7790, Breitenstein, Caterina, Bruehl, Stefanie ORCID: 0000-0003-4826-1990, Copland, David A., Cranfill, Tamara B., Di Pietro-Bachmann, Marie, Enderby, Pamela ORCID: 0000-0002-4371-9053, Fillingham, Joanne, Galli, Federica Lucia, Gandolfi, Marialuisa, Glize, Bertrand, Godecke, Erin, Hawkins, Neil, Hilari, Katerina, Hinckley, Jacqueline, Horton, Simon, Howard, David, Jaecks, Petra, Jefferies, Elizabeth, Jesus, Luis M. T., Kambanaros, Maria, Kang, Eun Kyoung, Khedr, Eman M., Kong, Anthony Pak-Hin, Kukkonen, Tarja, Laganaro, Marina, Ralph, Matthew A. Lambon, Laska, Ann Charlotte, Leemann, Beatrice, Leff, Alexander P., Lima, Roxele Ribeiro, Lorenz, Antje, MacWhinney, Brian, Marshall, Rebecca Shisler, Mattioli, Flavia, Mavis, Iiknur, Meinzer, Marcus, Nilipour, Reza, Noe, Enrique, Paik, Nam-Jong, Palmer, Rebecca, Papathanasiou, Ilias, Patricio, Brigida F., Martins, Isabel Pavao, Price, Cathy, Jakovac, Tatjana Prizl, Rochon, Elizabeth, Rose, Miranda L., Rosso, Charlotte, Rubi-Fessen, Ilona ORCID: 0000-0002-9775-3812, Ruiter, Marina B., Snell, Claerwen, Stahl, Benjamin, Szaflarski, Jerzy P., Thomas, Shirley A., Van de Sandt-Koenderman, Mieke, Van der Meulen, Ineke, Visch-Brink, Evy, Worrall, Linda, Wright, Heather Harris and Brady, Marian C. . 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. ABINGDON: ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD. ISSN 1464-5041

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Abstract

Background: 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.

Item Type: Journal Article
Creators:
CreatorsEmailORCIDORCID Put Code
Williams, Louise R.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Ali, MyzoonUNSPECIFIEDorcid.org/0000-0001-5899-2485UNSPECIFIED
VandenBerg, KathrynUNSPECIFIEDorcid.org/0000-0001-5035-9650UNSPECIFIED
Williams, Linda J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Abo, MasahiroUNSPECIFIEDorcid.org/0000-0001-6701-4974UNSPECIFIED
Becker, FrankUNSPECIFIEDorcid.org/0000-0002-0857-0628UNSPECIFIED
Bowen, AudreyUNSPECIFIEDorcid.org/0000-0003-4075-1215UNSPECIFIED
Brandenburg, CaitlinUNSPECIFIEDorcid.org/0000-0002-6992-7790UNSPECIFIED
Breitenstein, CaterinaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Bruehl, StefanieUNSPECIFIEDorcid.org/0000-0003-4826-1990UNSPECIFIED
Copland, David A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Cranfill, Tamara B.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Di Pietro-Bachmann, MarieUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Enderby, PamelaUNSPECIFIEDorcid.org/0000-0002-4371-9053UNSPECIFIED
Fillingham, JoanneUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Galli, Federica LuciaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Gandolfi, MarialuisaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Glize, BertrandUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Godecke, ErinUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hawkins, NeilUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hilari, KaterinaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hinckley, JacquelineUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Horton, SimonUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Howard, DavidUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Jaecks, PetraUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Jefferies, ElizabethUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Jesus, Luis M. T.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kambanaros, MariaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kang, Eun KyoungUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Khedr, Eman M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kong, Anthony Pak-HinUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kukkonen, TarjaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Laganaro, MarinaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Ralph, Matthew A. LambonUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Laska, Ann CharlotteUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Leemann, BeatriceUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Leff, Alexander P.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Lima, Roxele RibeiroUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Lorenz, AntjeUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
MacWhinney, BrianUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Marshall, Rebecca ShislerUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mattioli, FlaviaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mavis, IiknurUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Meinzer, MarcusUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Nilipour, RezaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Noe, EnriqueUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Paik, Nam-JongUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Palmer, RebeccaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Papathanasiou, IliasUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Patricio, Brigida F.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Martins, Isabel PavaoUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Price, CathyUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Jakovac, Tatjana PrizlUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Rochon, ElizabethUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Rose, Miranda L.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Rosso, CharlotteUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Rubi-Fessen, IlonaUNSPECIFIEDorcid.org/0000-0002-9775-3812UNSPECIFIED
Ruiter, Marina B.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Snell, ClaerwenUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Stahl, BenjaminUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Szaflarski, Jerzy P.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Thomas, Shirley A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Van de Sandt-Koenderman, MiekeUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Van der Meulen, InekeUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Visch-Brink, EvyUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Worrall, LindaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Wright, Heather HarrisUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Brady, Marian C.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
URN: urn:nbn:de:hbz:38-608327
DOI: 10.1080/02687038.2021.1897081
Journal or Publication Title: Aphasiology
Publisher: ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD
Place of Publication: ABINGDON
ISSN: 1464-5041
Language: English
Faculty: Unspecified
Divisions: Unspecified
Subjects: no entry
Uncontrolled Keywords:
KeywordsLanguage
BIG DATA; LIFEMultiple languages
Audiology & Speech-Language Pathology; Linguistics; Clinical Neurology; RehabilitationMultiple languages
URI: http://kups.ub.uni-koeln.de/id/eprint/60832

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