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

Alzheimer's & Dementia : the Journal of the Alzheimer's Association
Olin JanssenCarlos Diaz

Abstract

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

References

Sep 21, 2010·BMJ : British Medical Journal·Alicia O'CathainJon Nicholl
Jul 2, 2011·Nature Reviews. Drug Discovery·Hans-Georg EichlerBrigitte Bloechl-Daum
Jan 18, 2015·Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research·Marc L BergerDavid Madigan
Mar 11, 2015·Alzheimer's & Dementia : the Journal of the Alzheimer's Association·Elisabetta VaudanoMichel Goldman
Jul 18, 2017·Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research·Amr MakadyUNKNOWN (on behalf of GetReal Work Package 1)
Dec 26, 2018·Journal of Alzheimer's Disease : JAD·John GallacherUNKNOWN ROADMAP Consortium

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Citations

Feb 18, 2021·European Journal of Nuclear Medicine and Molecular Imaging·Matteo Cotta RamusinoMarina Boccardi
Dec 22, 2020·Alzheimer's & Dementia : Translational Research & Clinical Interventions·Colin BirkenbihlUNKNOWN and the Alzheimer's Disease Neuroimaging Initiative
Sep 22, 2020·Expert Review of Pharmacoeconomics & Outcomes Research·Anders GustavssonRobin Thompson
Apr 7, 2021·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Ana DiazCathie Sudlow
Oct 29, 2021·Health & Social Care in the Community·Michael SmithDebbie Tolson

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