@article{RN332,
   author = {Janssen, O. and Vos, S. J. B. and García-Negredo, G. and Tochel, C. and Gustavsson, A. and Smith, M. and Ly, A. and Nelson, M. and Baldwin, H. and Sudlow, C. and Bexelius, C. and Jindra, C. and Vaci, N. and Bauermeister, S. and Gallacher, J. and Ponjoan, A. and Dufouil, C. and Garre Olmo, J. and Pedersen, L. and Skoog, I. and Hottgenroth, A. and Visser, P. J. and van der Lei, J. and Diaz, C.},
   title = {Real-world evidence in Alzheimer's disease: The ROADMAP Data Cube},
   journal = {Alzheimers Dement},
   volume = {16},
   number = {3},
   pages = {461-471},
   note = {1552-5279 Janssen, Olin Vos, Stephanie J B García-Negredo, Glòria Tochel, Claire Gustavsson, Anders Smith, Michael Ly, Amanda Nelson, Mia Baldwin, Helen Sudlow, Catherine Bexelius, Christin Jindra, Christoph Vaci, Nemanja Bauermeister, Sarah Gallacher, John Ponjoan, Anna Dufouil, Carole Garre Olmo, Josep Pedersen, Lars Skoog, Ingmar Hottgenroth, Antje Visser, Pieter Jelle van der Lei, Johan Diaz, Carlos MR/L023784/1/MRC_/Medical Research Council/United Kingdom MR/009076/1/MRC_/Medical Research Council/United Kingdom 116020/Innovative Medicines Initiative/International European Federation of Pharmaceutical Industries and Associations/International Journal Article Research Support, Non-U.S. Gov't United States 2020/03/12 Alzheimers Dement. 2020 Mar;16(3):461-471. doi: 10.1016/j.jalz.2019.09.087. Epub 2020 Jan 6.},
   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 = {*Activities of Daily Living
*Alzheimer Disease/psychology/therapy
Comorbidity
Data Interpretation, Statistical
*Disease Progression
Europe
Humans
Stakeholder Participation
Alzheimer's disease
Disease spectrum
Gap analysis
Outcomes
ROADMAP project
Real-world data
Stakeholders ,
ISSN = 1552-5260 ,
DOI = 10.1016/j.jalz.2019.09.087},
   year = {2020},
   type = {Journal Article}
}

{"_id":"wyFFQh2me5Z94ayYq","bibbaseid":"janssen-vos-garcanegredo-tochel-gustavsson-smith-ly-nelson-etal-realworldevidenceinalzheimersdiseasetheroadmapdatacube-2020","author_short":["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.","Skoog, I.","Hottgenroth, A.","Visser, P. J.","van der Lei, J.","Diaz, C."],"bibdata":{"bibtype":"article","type":"Journal Article","author":[{"propositions":[],"lastnames":["Janssen"],"firstnames":["O."],"suffixes":[]},{"propositions":[],"lastnames":["Vos"],"firstnames":["S.","J.","B."],"suffixes":[]},{"propositions":[],"lastnames":["García-Negredo"],"firstnames":["G."],"suffixes":[]},{"propositions":[],"lastnames":["Tochel"],"firstnames":["C."],"suffixes":[]},{"propositions":[],"lastnames":["Gustavsson"],"firstnames":["A."],"suffixes":[]},{"propositions":[],"lastnames":["Smith"],"firstnames":["M."],"suffixes":[]},{"propositions":[],"lastnames":["Ly"],"firstnames":["A."],"suffixes":[]},{"propositions":[],"lastnames":["Nelson"],"firstnames":["M."],"suffixes":[]},{"propositions":[],"lastnames":["Baldwin"],"firstnames":["H."],"suffixes":[]},{"propositions":[],"lastnames":["Sudlow"],"firstnames":["C."],"suffixes":[]},{"propositions":[],"lastnames":["Bexelius"],"firstnames":["C."],"suffixes":[]},{"propositions":[],"lastnames":["Jindra"],"firstnames":["C."],"suffixes":[]},{"propositions":[],"lastnames":["Vaci"],"firstnames":["N."],"suffixes":[]},{"propositions":[],"lastnames":["Bauermeister"],"firstnames":["S."],"suffixes":[]},{"propositions":[],"lastnames":["Gallacher"],"firstnames":["J."],"suffixes":[]},{"propositions":[],"lastnames":["Ponjoan"],"firstnames":["A."],"suffixes":[]},{"propositions":[],"lastnames":["Dufouil"],"firstnames":["C."],"suffixes":[]},{"propositions":[],"lastnames":["Garre","Olmo"],"firstnames":["J."],"suffixes":[]},{"propositions":[],"lastnames":["Pedersen"],"firstnames":["L."],"suffixes":[]},{"propositions":[],"lastnames":["Skoog"],"firstnames":["I."],"suffixes":[]},{"propositions":[],"lastnames":["Hottgenroth"],"firstnames":["A."],"suffixes":[]},{"propositions":[],"lastnames":["Visser"],"firstnames":["P.","J."],"suffixes":[]},{"propositions":["van","der"],"lastnames":["Lei"],"firstnames":["J."],"suffixes":[]},{"propositions":[],"lastnames":["Diaz"],"firstnames":["C."],"suffixes":[]}],"title":"Real-world evidence in Alzheimer's disease: The ROADMAP Data Cube","journal":"Alzheimers Dement","volume":"16","number":"3","pages":"461-471","note":"1552-5279 Janssen, Olin Vos, Stephanie J B García-Negredo, Glòria Tochel, Claire Gustavsson, Anders Smith, Michael Ly, Amanda Nelson, Mia Baldwin, Helen Sudlow, Catherine Bexelius, Christin Jindra, Christoph Vaci, Nemanja Bauermeister, Sarah Gallacher, John Ponjoan, Anna Dufouil, Carole Garre Olmo, Josep Pedersen, Lars Skoog, Ingmar Hottgenroth, Antje Visser, Pieter Jelle van der Lei, Johan Diaz, Carlos MR/L023784/1/MRC_/Medical Research Council/United Kingdom MR/009076/1/MRC_/Medical Research Council/United Kingdom 116020/Innovative Medicines Initiative/International European Federation of Pharmaceutical Industries and Associations/International Journal Article Research Support, Non-U.S. Gov't United States 2020/03/12 Alzheimers Dement. 2020 Mar;16(3):461-471. doi: 10.1016/j.jalz.2019.09.087. Epub 2020 Jan 6.","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":"*Activities of Daily Living *Alzheimer Disease/psychology/therapy Comorbidity Data Interpretation, Statistical *Disease Progression Europe Humans Stakeholder Participation Alzheimer's disease Disease spectrum Gap analysis Outcomes ROADMAP project Real-world data Stakeholders , ISSN = 1552-5260 , DOI = 10.1016/j.jalz.2019.09.087","year":"2020","bibtex":"@article{RN332,\r\n author = {Janssen, O. and Vos, S. J. B. and García-Negredo, G. and Tochel, C. and Gustavsson, A. and Smith, M. and Ly, A. and Nelson, M. and Baldwin, H. and Sudlow, C. and Bexelius, C. and Jindra, C. and Vaci, N. and Bauermeister, S. and Gallacher, J. and Ponjoan, A. and Dufouil, C. and Garre Olmo, J. and Pedersen, L. and Skoog, I. and Hottgenroth, A. and Visser, P. J. and van der Lei, J. and Diaz, C.},\r\n title = {Real-world evidence in Alzheimer's disease: The ROADMAP Data Cube},\r\n journal = {Alzheimers Dement},\r\n volume = {16},\r\n number = {3},\r\n pages = {461-471},\r\n note = {1552-5279 Janssen, Olin Vos, Stephanie J B García-Negredo, Glòria Tochel, Claire Gustavsson, Anders Smith, Michael Ly, Amanda Nelson, Mia Baldwin, Helen Sudlow, Catherine Bexelius, Christin Jindra, Christoph Vaci, Nemanja Bauermeister, Sarah Gallacher, John Ponjoan, Anna Dufouil, Carole Garre Olmo, Josep Pedersen, Lars Skoog, Ingmar Hottgenroth, Antje Visser, Pieter Jelle van der Lei, Johan Diaz, Carlos MR/L023784/1/MRC_/Medical Research Council/United Kingdom MR/009076/1/MRC_/Medical Research Council/United Kingdom 116020/Innovative Medicines Initiative/International European Federation of Pharmaceutical Industries and Associations/International Journal Article Research Support, Non-U.S. Gov't United States 2020/03/12 Alzheimers Dement. 2020 Mar;16(3):461-471. doi: 10.1016/j.jalz.2019.09.087. Epub 2020 Jan 6.},\r\n 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.},\r\n keywords = {*Activities of Daily Living\r\n*Alzheimer Disease/psychology/therapy\r\nComorbidity\r\nData Interpretation, Statistical\r\n*Disease Progression\r\nEurope\r\nHumans\r\nStakeholder Participation\r\nAlzheimer's disease\r\nDisease spectrum\r\nGap analysis\r\nOutcomes\r\nROADMAP project\r\nReal-world data\r\nStakeholders ,\r\nISSN = 1552-5260 ,\r\nDOI = 10.1016/j.jalz.2019.09.087},\r\n year = {2020},\r\n type = {Journal Article}\r\n}\r\n\r\n","author_short":["Janssen, O.","Vos, S. J. 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