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Alzheimers Dement. 2019 Nov 27. pii: S1552-5260(19)35487-1. doi: 10.1016/j.jalz.2019.09.087. [Epub ahead of print]

Real-world evidence in Alzheimer's disease: The ROADMAP Data Cube.

Author information

1
Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University, Maastricht, The Netherlands. Electronic address: olin.janssen@maastrichtuniversity.nl.
2
Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University, Maastricht, The Netherlands.
3
Synapse Research Management Partners SL, Madrid, Spain.
4
Centre for Medical Informatics, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, UK.
5
Quantify Research, Stockholm, Sweden; Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden.
6
Centre for Medical Informatics, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, UK; MRC Integrative Epidemiology Unit (IEU), Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
7
Centre for Medical Informatics, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, UK; Department of Psychiatry, University of Oxford, Oxford, UK.
8
F. Hoffmann-La Roche Ltd., Basel, Switzerland.
9
Department of Psychiatry, University of Oxford, Oxford, UK.
10
Vascular Health Research Group (ISV-Girona) Fundació Institut Universitari per a la recerca a l'Atenció Primària de Salut Jordi Gol i Gorina (IDIAPJGol), Barcelona, Catalonia, Spain; Girona Biomedical Research Institute (IDIBGI), Girona, Catalonia, Spain.
11
CHU de Bordeaux, Pole de sante Publique, Bordeaux, France; Centre Inserm U1219, Institut de Santé Publique, d'Epidémiologie et de Développement (ISPED), Bordeaux School of Public Health, Université de Bordeaux, Bordeaux, France.
12
Girona Biomedical Research Institute (IDIBGI), Girona, Catalonia, Spain; Department of Medical Sciences, School of Medicine, University of Girona, Catalonia, Spain.
13
Department of Clinical Medicine, Aarhus University, Aarhus N, Denmark.
14
Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Department of Old Age Psychiatry and Cognitive Disorders, Sahlgrenska University Hospital, Gothenburg, Sweden.
15
Lilly Deutschland GmbH, Bad Homburg, Germany.
16
Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University, Maastricht, The Netherlands; Alzheimer Centre and Department of Neurology, Amsterdam Neuroscience, VU University Medical Centre, Amsterdam, The Netherlands.
17
Department of Medical Informatics, Erasmus University Medical Center, Rotterdam, The Netherlands.

Abstract

INTRODUCTION:

The ROADMAP project aimed to provide an integrated overview of European real-world data on Alzheimer's disease (AD) across the disease spectrum.

METHODS:

Metadata were identified from data sources in catalogs of European AD projects. Priority outcomes for different stakeholders were identified through systematic literature review, patient and public consultations, and stakeholder surveys.

RESULTS:

Information about 66 data sources and 13 outcome domains were integrated into a Data Cube. Gap analysis identified cognitive ability, functional ability/independence, behavioral/neuropsychiatric symptoms, treatment, comorbidities, and mortality as the outcomes collected most. Data were most lacking in caregiver-related outcomes. In general, electronic health records covered a broader, less detailed data spectrum than research cohorts.

DISCUSSION:

This integrated real-world AD data overview provides an intuitive visual model that facilitates initial assessment and identification of gaps in relevant outcomes data to inform future prospective data collection and matching of data sources and outcomes against research protocols.

KEYWORDS:

Alzheimer's disease; Disease spectrum; Gap analysis; Outcomes; ROADMAP project; Real-world data; Stakeholders

PMID:
31786128
DOI:
10.1016/j.jalz.2019.09.087

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