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, vol. 36, pp. 513–533
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.
Authors 68
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Glasgow Caledonian University · University of Edinburgh
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Nursing Midwifery and Allied Health Professions Research Unit, Glasgow Caledonian University, Glasgow, UK
Usher Institute, University of Edinburgh, Edinburgh, UK
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Nursing Midwifery and Allied Health Professions Research Unit, Glasgow Caledonian University, Glasgow, UK
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Affiliation as printed
Nursing Midwifery and Allied Health Professions Research Unit, Glasgow Caledonian University, Glasgow, UK
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Glasgow Caledonian University · University of Edinburgh
Affiliation as printed
Nursing Midwifery and Allied Health Professions Research Unit, Glasgow Caledonian University, Glasgow, UK
Usher Institute, University of Edinburgh, Edinburgh, UK
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Jikei University School of Medicine
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Department of Rehabilitation Medicine, The Jikei University School of Medicine, Tokyo, Japan
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University of Oslo · Sunnaas sykehus
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Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, and Sunnaas Rehabilitation Hospital, Nesoddtangen, Norway
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Manchester Academic Health Science Centre · University of Manchester
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Geoffrey Jefferson Brain Research Centre, Manchester Academic Health Science Centre, Northern Care Alliance & University of Manchester, Manchester, UK
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School of Health and Rehabilitation Sciences, the University of Queensland, Brisbane, Australia
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University of Münster · University Hospital Münster
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Department of Neurology with Institute of Translational Neurology, University of Muenster, Muenster, Germany
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Stefanie Bruehl Aachen Clinical and Cognitive Neurosciences Department of Neurology, Medical Faculty
University of Manchester · St. Mauritius Therapieklinik · RWTH Aachen University
Affiliation as printed
St Mauritius Rehabilitation Centre, Meerbusch, Germany; Clinical and Cognitive Neurosciences, Department of Neurology, Medical Faculty, RWTH Aachen University, Aachen, Germany; Division of Neuroscience and Experimental Psychology, School of Biological Sciences, University of Manchester, UK
Division of Neuroscience and Experimental Psychology, School of Biological Sciences, University of Manchester, UK
St Mauritius Rehabilitation Centre, Meerbusch, Germany
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School of Health and Rehabilitation Sciences, the University of Queensland, Brisbane, Australia
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Department of Communication Sciences and Disorders, Eastern Kentucky University, Richmond, Kentucky, USA
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University of Geneva · University Hospital of Geneva
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Division of Neurorehabilitation, Department of Clinical Neurosciences, University Hospitals and University of Geneva, Geneva, Switzerland
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School of Health and Related Research, University of Sheffield, Sheffield, UK
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Nursing Directorate, NHS Improvement, London, UK
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Azienda Sanitaria Unica Regionale - ASUR, Marche Polytechnic University, Ancona, Italy
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Department of Neuroscience, Biomedicine and Movement Sciences, University of Verona, Verona, Italy
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Université de Bordeaux · Centre Hospitalier Universitaire de Bordeaux
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Department of Physical Medicine and Rehabilitation, CHU De Bordeaux, France
EA 4136 Handicap Activity Cognition Health, University of Bordeaux, France
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Edith Cowan University · Sir Charles Gairdner Hospital
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School of Medical and Health Sciences, Speech Pathology, Edith Cowan University and Sir Charles Gairdner Hospital, Perth, Australia
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Institute of Health & Wellbeing, University of Glasgow, Glasgow, UK
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University of London · City, University of London · City St George's, University of London
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Centre for Language and Communication Science Research, City, University of London, London, UK
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Nova Southeastern University, Fort Lauderdale, Florida, USA
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School of Health Sciences, University of East Anglia, Norwich, UK
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School of Education Communication and Language Sciences, Newcastle University, Newcastle-Upon-Tyne, UK
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Faculty of Linguistics and Literary Studies, Bielefeld University, Bielefeld, Germany
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Department of Psychology, University of York, York, UK
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School of Health Sciences (ESSUA) and Institute of Electronics and Informatics Engineering of Aveiro (IEETA), University of Aveiro, Aveiro, Portugal
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Cyprus University of Technology
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Department of Rehabilitation Sciences, Cyprus University of Technology, Limassol, Cyprus
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Kangwon National University Hospital
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Department of Rehabilitation Medicine, Kangwon National University Hospital, Gangwon-do, Republic of Korea
aa Department of Rehabilitation Medicine, Kangwon National University Hospital, Gangwon-do, Republic of Korea
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Assiut University Hospitals · Assiut University
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Department of Neurology, Assiut University Hospital, Assiut, Egypt
bb Department of Neurology, Assiut University Hospital, Assiut, Egypt
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School of Communication Sciences and Disorders, University of Central Florida, Orlando, USA
cc School of Communication Sciences and Disorders, University of Central Florida, Orlando, USA
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ENT/Department of Phoniatry, Tampere University Hospital, Tampere, Finland
dd ENT/Department of Phoniatry, Tampere University Hospital, Tampere, Finland
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Faculty of Psychology and Educational Science, University of Geneva, Geneva, Switzerland
ee Faculty of Psychology and Educational Science, University of Geneva, Geneva, Switzerland
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MRC Cognition and Brain Sciences Unit · University of Cambridge
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MRC Cognition and Brain Sciences Unit, University of Cambridge, Cambridge, UK
ff MRC Cognition and Brain Sciences Unit, University of Cambridge, Cambridge, UK
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Danderyds sjukhus · Karolinska Institutet
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Department of Clinical Sciences, Karolinska Institutet, Danderyd Hospital, Stockholm, Sweden
gg Department of Clinical Sciences, Karolinska Institutet, Danderyd Hospital, Stockholm, Sweden
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Neurorééducation, Département Des Neurosciences Cliniques, Hôpitaux Universitaires De Genève, Geneva, Switzerland
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UCL Queen Square Institute of Neurology · University College London
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Department of Brain Repair and Rehabilitation, Institute of Neurology, UCL, London, UK
ii Department of Brain Repair and Rehabilitation, Institute of Neurology, UCL, London, UK
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Department of Speech Language Pathology, Educational Association Bom Jesus – IELUSC, Santa Catarina, Brazil
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Humboldt-Universität zu Berlin
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Department of Psychology, Humboldt-Universität zu Berlin, Berlin, Germany
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Department of Psychology, Carnegie Mellon University, Pittsburgh, USA
ll Department of Psychology, Carnegie Mellon University, Pittsburgh, USA
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Department of Communication Sciences and Special Education, University of Georgia, Georgia, USA
mm Department of Communication Sciences and Special Education, University of Georgia, Georgia, USA
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Azienda Socio Sanitaria Territoriale degli Spedali Civili di Brescia
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Neuropsychology Unit, ASST Spedali Civili of Brescia, Brescia, Italy
nn Neuropsychology Unit, ASST Spedali Civili of Brescia, Brescia, Italy
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Department of Speech and Language Therapy, Anadolu University, Eskişehir, Turkey
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Universitätsmedizin Greifswald · Universität Greifswald
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Department of Neurology, University Medicine Greifswald, Greifswald, Germany
pp Department of Neurology, University Medicine Greifswald, Greifswald, Germany
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University of Social Welfare and Rehabilitation Sciences
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Department of Speech Therapy, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran
qq Department of Speech Therapy, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran
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NEURORHB-Hospitales Vithas, Valencia, Spain
rr NEURORHB-Hospitales Vithas, Valencia, Spain
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Seoul National University · Seoul National University Bundang Hospital
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Department of Rehabilitation Medicine, Seoul National University College of Medicine, Seoul National University Bundang Hospital, Seongnam, Republic of Korea
ss Department of Rehabilitation Medicine, Seoul National University College of Medicine, Seoul National University Bundang Hospital, Seongnam, Republic of Korea
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School of Health and Related Research, University of Sheffield, Sheffield, UK
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Department of Speech and Language Therapy, University of Patras, Patras, Greece
tt Department of Speech and Language Therapy, University of Patras, Patras, Greece
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Department of Speech Therapy, School of Health, Polytechnic Institute of Porto, Porto, Portugal
uu Department of Speech Therapy, School of Health, Polytechnic Institute of Porto, Porto, Portugal
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Laboratório De Estudos De Linguagem, Faculdade De Medicina De Lisboa, Universidade De Lisboa, Lisbon, Portugal
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Wellcome Centre for Human Neuroimaging · University College London
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Wellcome Centre for Human Neuroimaging, UCL, London, UK
ww Wellcome Centre for Human Neuroimaging, UCL, London, UK
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Department of Speech and Language Pathology, Faculty of Education and Rehabilitation Sciences, University of Zagreb, Zagreb, Croatia
xx Department of Speech and Language Pathology, Faculty of Education and Rehabilitation Sciences, University of Zagreb, Zagreb, Croatia
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University of Toronto · Toronto Rehabilitation Institute
Affiliation as printed
Department of Speech-Language Pathology and Rehabilitation Sciences Institute, University of Toronto, and Toronto Rehabilitation Institute, Toronto, Canada
yy Department of Speech-Language Pathology and Rehabilitation Sciences Institute, University of Toronto, and Toronto Rehabilitation Institute, Toronto, Canada
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Centre of Research Excellence in Aphasia Recovery and Rehabilitation, School of Allied Health, Human Services and Sport, La Trobe University, Melbourne, Australia
zz Centre of Research Excellence in Aphasia Recovery and Rehabilitation, School of Allied Health, Human Services and Sport, La Trobe University, Melbourne, Australia
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Sorbonne Université · Pitié-Salpêtrière Hospital · Institut du Cerveau
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Institut Du Cerveau Et Del La Moelle Épinière, Sorbonne University, and APHP, Urgences Cérébro-Vasculaires, Hôpital De La Pitié Salpêtrière, Paris, France
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RehaNova Rehabilitation Hospital and Department of Special Education and Rehabilitation, University of Cologne, Cologne, Germany
bbb RehaNova Rehabilitation Hospital and Department of Special Education and Rehabilitation, University of Cologne, Cologne, Germany
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Radboud University Nijmegen · Sint Maartenskliniek
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Sint Maartenskliniek, Rehabilitation Centre and Centre for Language Studies, Radboud University, Nijmegen, The Netherlands
ccc Sint Maartenskliniek, Rehabilitation Centre and Centre for Language Studies, Radboud University, Nijmegen, The Netherlands
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Warrington and Halton Teaching Hospitals NHS Foundation Trust · Warrington Hospital
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Warrington and Halton Teaching Hospitals NHS Foundation Trust, Warrington, UK
ddd Warrington and Halton Teaching Hospitals NHS Foundation Trust, Warrington, UK
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Charité - Universitätsmedizin Berlin
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Department of Neurology, Charité - Universitätsmedizin Berlin, Berlin, Germany
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University of Alabama at Birmingham · UAB Medicine
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UAB Epilepsy Centre, Department of Neurology, University of Alabama at Birmingham, Alabama, USA
fff UAB Epilepsy Centre, Department of Neurology, University of Alabama at Birmingham, Alabama, USA
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Division of Rehabilitation & Ageing; School of Medicine, University of Nottingham, Nottingham, UK
ggg Division of Rehabilitation & Ageing
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Erasmus MC · Rijndam Revalidatiecentrum
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Department of Rehabilitation, Rijndam rehabilitation centre, Rotterdam, the Netherlands AND Eramus MC University Medical Centre, Rotterdam, The Netherlands
hhh Department of Rehabilitation, Rijndam rehabilitation centre, Rotterdam, the Netherlands AND Eramus MC University Medical Centre, Rotterdam, The Netherlands
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Erasmus MC · Rijndam Revalidatiecentrum
Affiliation as printed
Department of Rehabilitation, Rijndam rehabilitation centre, Rotterdam, the Netherlands AND Eramus MC University Medical Centre, Rotterdam, The Netherlands
hhh Department of Rehabilitation, Rijndam rehabilitation centre, Rotterdam, the Netherlands AND Eramus MC University Medical Centre, Rotterdam, The Netherlands
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Erasmus MC · Erasmus University Rotterdam
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Department of Neurology and Neurosurgery, Erasmus University Medical Center, Rotterdam, Netherlands
iii Department of Neurology and Neurosurgery, Erasmus University Medical Center, Rotterdam, Netherlands
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School of Health and Rehabilitation Sciences, the University of Queensland, Brisbane, Australia
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College of Allied Health Sciences, East Carolina University, Greenville, North Carolina, USA
jjj College of Allied Health Sciences, East Carolina University, Greenville, North Carolina, USA
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Marian Brady corresponding
Affiliation as printed
Nursing Midwifery and Allied Health Professions Research Unit, Glasgow Caledonian University, Glasgow, UK
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