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

Olin Janssen; Stephanie J B Vos; Glòria García-Negredo; Claire Tochel; Anders Gustavsson; Michael Smith; Amanda Ly; Mia Nelson; Helen Baldwin; Catherine Sudlow; Christin Bexelius; Christoph Jindra; Nemanja Vaci; Sarah Bauermeister; John Gallacher; Anna Ponjoan; Carole Dufouil; Josep Garre Olmo; Lars Pedersen; Ingmar Skoog; Antje Hottgenroth; Pieter Jelle Visser; Johan van der Lei; Carlos Diaz

doi:10.1016/j.jalz.2019.09.087

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

Olin Janssen^*, Stephanie J B Vos, Glòria García-Negredo, Claire Tochel, Anders Gustavsson, Michael Smith, Amanda Ly, Mia Nelson, Helen Baldwin, Catherine Sudlow, Christin Bexelius, Christoph Jindra, Nemanja Vaci, Sarah Bauermeister, John Gallacher, Anna Ponjoan, Carole Dufouil, Josep Garre Olmo, Lars Pedersen, Ingmar SkoogAntje Hottgenroth, Pieter Jelle Visser, Johan van der Lei, Carlos Diaz

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

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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.

Original language	English
Pages (from-to)	461-471
Number of pages	11
Journal	Alzheimer's & Dementia
Volume	16
Issue number	3
Early online date	27 Nov 2019
DOIs	https://doi.org/10.1016/j.jalz.2019.09.087
Publication status	Published - Mar 2020

Keywords

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

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Cite this

Janssen, O., Vos, S. J. B., García-Negredo, G., Tochel, C., Gustavsson, A., Smith, M., Ly, A., Nelson, M., Baldwin, H., Sudlow, C., Bexelius, C., Jindra, C., Vaci, N., Bauermeister, S., Gallacher, J., Ponjoan, A., Dufouil, C., Garre Olmo, J., Pedersen, L., ... Diaz, C. (2020). Real-world evidence in Alzheimer's disease: The ROADMAP Data Cube. Alzheimer's & Dementia, 16(3), 461-471. https://doi.org/10.1016/j.jalz.2019.09.087

@article{f77eadd4fda1429880e1385fd5fe9737,

title = "Real-world evidence in Alzheimer's disease: The ROADMAP Data Cube",

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, Real-world data, ROADMAP project, Stakeholders",

author = "Olin Janssen and Vos, {Stephanie J B} and Gl{\`o}ria Garc{\'i}a-Negredo and Claire Tochel and Anders Gustavsson and Michael Smith and Amanda Ly and Mia Nelson and Helen Baldwin and Catherine Sudlow and Christin Bexelius and Christoph Jindra and Nemanja Vaci and Sarah Bauermeister and John Gallacher and Anna Ponjoan and Carole Dufouil and {Garre Olmo}, Josep and Lars Pedersen and Ingmar Skoog and Antje Hottgenroth and Visser, {Pieter Jelle} and {van der Lei}, Johan and Carlos Diaz",

year = "2020",

month = mar,

doi = "10.1016/j.jalz.2019.09.087",

language = "English",

volume = "16",

pages = "461--471",

journal = "Alzheimer's & Dementia",

issn = "1552-5260",

publisher = "Elsevier Science",

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Janssen, O , Vos, SJB, García-Negredo, G, Tochel, C, Gustavsson, A, Smith, M, Ly, A, Nelson, M, Baldwin, H, Sudlow, C, Bexelius, C, Jindra, C, Vaci, N, Bauermeister, S, Gallacher, J, Ponjoan, A, Dufouil, C, Garre Olmo, J, Pedersen, L, Skoog, I, Hottgenroth, A, Visser, PJ, van der Lei, J & Diaz, C 2020, 'Real-world evidence in Alzheimer's disease: The ROADMAP Data Cube', Alzheimer's & Dementia, vol. 16, no. 3, pp. 461-471. https://doi.org/10.1016/j.jalz.2019.09.087

TY - JOUR

T1 - Real-world evidence in Alzheimer's disease

T2 - The ROADMAP Data Cube

AU - Janssen, Olin

AU - Vos, Stephanie J B

AU - García-Negredo, Glòria

AU - Tochel, Claire

AU - Gustavsson, Anders

AU - Smith, Michael

AU - Ly, Amanda

AU - Nelson, Mia

AU - Baldwin, Helen

AU - Sudlow, Catherine

AU - Bexelius, Christin

AU - Jindra, Christoph

AU - Vaci, Nemanja

AU - Bauermeister, Sarah

AU - Gallacher, John

AU - Ponjoan, Anna

AU - Dufouil, Carole

AU - Garre Olmo, Josep

AU - Pedersen, Lars

AU - Skoog, Ingmar

AU - Hottgenroth, Antje

AU - Visser, Pieter Jelle

AU - van der Lei, Johan

AU - Diaz, Carlos

PY - 2020/3

Y1 - 2020/3

N2 - 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.

AB - 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.

KW - Alzheimer's disease

KW - Disease spectrum

KW - Gap analysis

KW - Outcomes

KW - Real-world data

KW - ROADMAP project

KW - Stakeholders

U2 - 10.1016/j.jalz.2019.09.087

DO - 10.1016/j.jalz.2019.09.087

M3 - Article

C2 - 31786128

VL - 16

SP - 461

EP - 471

JO - Alzheimer's & Dementia

JF - Alzheimer's & Dementia

SN - 1552-5260

IS - 3

ER -