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Name EPAD
Long Name European prevention of Alzheimer’s dementia consortium
Description European prevention of Alzheimer’s dementia consortium. There is an urgent need for new treatments for Alzheimer’s disease. The number of people affected worldwide is expected to reach over 100 million by 2050, yet despite intensive efforts over many years, there is still no cure for Alzheimer’s and little in the way of treatments. Today, research increasingly focuses on ways to prevent the onset of Alzheimer’s in the first place. The EPAD project is pioneering a novel, more flexible approach to clinical trials of drugs designed to prevent Alzheimer’s dementia. Using an ‘adaptive’ trial design should deliver better results faster and at lower cost.  
Objectives 1. Define an accurate set of criteria for identifying Alzheimer’s pathology early in the course of disease in people who have no or minimal associated symptoms. 2. Identify these individuals from population and clinical cohorts or registers. 3. Develop a large longitudinal cohort study including these individuals with clinical, cognitive and biomarker assessments to ease identification for trial inclusion, provide trial run-in data and generate high quality data for updating these disease models, including defining risk for developing AD or evaluating efficacy. 4. Establish a protocol and infrastructure for a standing, double-blind, adaptive, proof of-concept clinical trial for secondary prevention of Alzheimer’s dementia.
Website http://ep-ad.org/
Start date 01-01-2015
End date 31-10-2020
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Name Projects Type of institution Country  
Synapse Research Management Partners SL EPAD AMYPAD NEURONET EMIF ROADMAP SME Spain
University Of Edinburgh EPAD AMYPAD EQIPD ROADMAP Academia United Kingdom
Janssen Pharmaceutica NV EPAD ADAPTED AMYPAD IMPRiND EQIPD NEURONET EMIF IM2PACT PHAGO PRISM RADAR-CNS RADAR-AD ROADMAP IDEA-FAST Pharma-Cog EPND EFPIA Belgium
Alzheimer Europe EPAD AMYPAD MOPEAD AETIONOMY EMIF RADAR-AD ROADMAP NEURONET Pharma-Cog EPND Patient/carers organisation Luxembourg
Eli Lilly And Company Ltd EPAD IMPRiND MOPEAD PHAGO PRISM RADAR-AD ROADMAP NEURONET IDEA-FAST Pharma-Cog EFPIA United Kingdom
F. Hoffmann-La Roche AG EPAD EQIPD EMIF PHAGO PRISM ROADMAP NEURONET IDEA-FAST Pharma-Cog EPND EFPIA Switzerland
Sanofi-Aventis Recherche & Developpement EPAD EQIPD AETIONOMY IM2PACT PHAGO NEURONET Mobilise-D IDEA-FAST EPND EFPIA France
Ac Immune SA EPAD ROADMAP EPND EFPIA Switzerland
Amgen EPAD EMIF Mobilise-D EFPIA Belgium
Biogen Idec Limited EPAD RADAR-CNS ROADMAP ADAPTED IDEA-FAST EFPIA United Kingdom
Eisai Inc EPAD PHAGO Pharma-Cog EFPIA United States
H. Lundbeck As EPAD IMPRiND IM2PACT PD-MitoQUANT PHAGO RADAR-CNS ROADMAP Pharma-Cog EFPIA Denmark
Merck Sharp & Dohme Corp EPAD EFPIA United States
Novartis Pharma AG EPAD IMPRiND EQIPD AETIONOMY IM2PACT PRISM RADAR-AD ROADMAP Mobilise-D Pharma-Cog EPND EFPIA Switzerland
Pfizer Limited EPAD EQIPD EMIF IM2PACT PRISM Mobilise-D IDEA-FAST EFPIA United Kingdom
UCB Biopharma SPRL EPAD EQIPD AETIONOMY EMIF PD-MitoQUANT RADAR-CNS IDEA-FAST Pharma-Cog EPND EFPIA Belgium
Assistance Publique - Hopitaux De Paris EPAD Academia France
Cardiff University EPAD IM2PACT Academia United Kingdom
Centre Hospitalier Universitaire De Toulouse EPAD AMYPAD Academia France
Fundacio Barcelonabeta Brain Research Center EPAD AMYPAD AETIONOMY Academia Spain
Institut National De La Sante Et De La Recherche Medicale EPAD EMIF Pharma-Cog Academia France
Karolinska Institutet EPAD AMYPAD MOPEAD AETIONOMY EMIF RADAR-AD Academia Sweden
Klinikum Der Universitaet Zu Koeln EPAD AMYPAD MOPEAD ADAPTED Academia Germany
Medical Research Council EPAD Academia United Kingdom
Stichting Katholieke Universiteit / Radboud University Nijmegen Medical Centre EPAD EQIPD PRISM AMYPAD PD-MitoQUANT PRISM2 Academia Netherlands
VU University Medical Center Amsterdam EPAD AMYPAD IM2PACT PRISM MOPEAD RADAR-CNS RADAR-AD EMIF PRISM2 Pharma-Cog EPND Academia Netherlands
Universite De Geneve EPAD AMYPAD EPND Academia Switzerland
University Of Cambridge EPAD IMPRiND PHAGO EMIF IDEA-FAST Academia United Kingdom
University Of Oxford EPAD IMPRiND IM2PACT RADAR-AD ROADMAP EMIF EPND Academia United Kingdom
University Of Leicester EPAD EMIF EPND Academia United Kingdom
Aridhia Informatics Ltd EPAD EPND SME United Kingdom
Berry Consultants LLP EPAD SME United Kingdom
Araclon Biotech SL EPAD SME Spain
Iqvia LTD EPAD Other United Kingdom
Boehringer Ingelheim International Gmbh PRISM EPAD EQIPD AETIONOMY EMIF Pharma-Cog PRISM2 EFPIA Germany
Erasmus Universitair Medisch Centrum Rotterdam PRISM ADAPTED AETIONOMY EMIF ROADMAP EPAD IDEA-FAST Academia Netherlands
Fraunhofer Gesellschaft Zur Foerderung Der Angewandten Forschung EV EPAD AETIONOMY PHAGO RADAR-AD Academia Germany
IXICO Technologies LTD AMYPAD ROADMAP EPAD SME United Kingdom
Takeda Pharmaceuticals International AG EPND EPAD PRISM RADAR-AD ROADMAP IDEA-FAST Mobilise-D NEURONET EFPIA Switzerland
WP number Description Project  
WP1 Scientific Challenges EPAD
WP2 Statistical/Methodology Engine Room EPAD
WP3 Parent Cohorts and EPAD Register EPAD
WP4 EPAD Cohort and EPAD Trials EPAD
WP5 Project Management EPAD
WP6 Dissemination EPAD
WP7 Business Model and Sustainability EPAD
WP8 Ethical, Legal and Social Implications EPAD
Deliverable number Title Project Submission date Link Keywords  
D1.1 Evaluation of pre-clinical and prodromal diagnostic criteria, risk spectrum and inclusion criteria for Register and Cohort EPAD 11-02-2015 http://ep-ad.org/mdocs-posts/wp1-deliverable-1-1-evaluation-of-pre-clinical-and-prodromal-diagnostic-criteria-risk-spectrum-and-inclusion-criteria-for-register-and-cohort/ EPAD
D1.2 Description of Compound Selection criteria and decision tree for PoC trial EPAD 22-12-2015 http://ep-ad.org/mdocs-posts/wp1-deliverable-1-2-description-of-compound-selection-criteria-and-decision-tree-for-proof-of-concept-trial/
D1.3 Interim Report on Biomarkers, Clinical Assessments, and Outcome Measures EPAD 02-02-2016 http://ep-ad.org/mdocs-posts/wp1-deliverable-1-3-interim-report-on-biomarkers-clinical-assessments-and-outcome-measures/
D1.4 Scientific report on compound inclusion for trial EPAD 12-07-2016 http://ep-ad.org/mdocs-posts/wp1-deliverable-1-4-scientific-report-on-compound-inclusion-for-trial/
D1.5 Interim Report on the Scientific Recommendations and Key Outcomes EPAD 10-08-2017 http://ep-ad.org/mdocs-posts/epad-deliverable-1-5-interim-report-on-the-scientific-recommendations-and-key-outcomes/
D1.6 Interim report on evaluation of biomarker and clinical assessments and outcomes from existing and acquired data EPAD 30-01-2019 http://ep-ad.org/mdocs-posts/wp1-deliverable-1-6-interim-report-on-evaluation-of-biomarker-and-clinical-assessments-and-outcomes-from-existing-and-acquired-data/
D2.1 Report on resources to be used for disease modelling EPAD 14-09-2015 http://ep-ad.org/mdocs-posts/wp2-deliverable-2-1-report-on-resources-to-be-used-for-disease-modelling/
D2.2 Initial skeleton design EPAD 18-11-2015 http://ep-ad.org/mdocs-posts/wp2-deliverable-2-2-initial-skeleton-design/
D2.3 Initial version of optimized model fitting software EPAD 21-06-2016 http://ep-ad.org/mdocs-posts/wp2-deliverable-2-3-initial-version-of-optimized-model-fitting-software/
D2.4 Draft Design Report complete for finalized design from the simulation process EPAD 10-10-2016 http://ep-ad.org/mdocs-posts/wp2-deliverable-2-4-draft-design-report-complete-for-finalized-design-from-the-simulation-process/
D2.5 Operational Process Document EPAD 31-10-2018 http://ep-ad.org/mdocs-posts/wp2-deliverable-d2-5-operational-process-document/
D2.6 Disease Risk Modelling EPAD 13-07-2017 http://ep-ad.org/mdocs-posts/wp2-deliverable-2-6-disease-risk-modelling/
D2.8 Disease risk Modelling Report V2 EPAD 13-02-2018 http://ep-ad.org/mdocs-posts/wp2-deliverable-2-8-disease-risk-modelling-report-v2/
D3.1 Inventory of Parent Cohorts as potential participants in EPAD EPAD 20-07-2015 http://ep-ad.org/mdocs-posts/wp3-deliverable-3-1-inventory-of-parent-cohorts-as-potential-participants-in-epad/
D3.2 (Template) Associated Scientific Collaborator Agreement EPAD 07-09-2015 http://ep-ad.org/mdocs-posts/wp3-deliverable-3-2-template-associated-scientific-collaborator-agreement/
D3.3 Report on fingerprinting and selection of suitable Parent Cohorts EPAD 03-11-2015 http://ep-ad.org/mdocs-posts/wp3-deliverable-3-3-report-on-fingerprinting-and-selection-of-suitable-parent-cohorts/
D3.4 Data Discovery software for EPAD Register v1 EPAD 27-08-2015 http://ep-ad.org/mdocs-posts/wp3-deliverable-3-4-data-discovery-software-for-epad-register-v1/
D3.5 Initial version of EPAD Register EPAD 28-03-2016 http://ep-ad.org/mdocs-posts/wp3-deliverable-3-5-initial-version-of-epad-register/
D3.6 Interim report on Parent Cohort fingerprinting, selection and use of data discovery software EPAD 12-07-2017 http://ep-ad.org/mdocs-posts/wp-3-deliverable-3-6-interim-report-on-parent-cohort-fingerprinting-selection-and-use-of-data-discovery-software/
D3.7 EPAD Register Update EPAD 22-02-2018 http://ep-ad.org/mdocs-posts/wp3-deliverable-3-7-epad-register-update/
D3.8 Final version of data discovery software and related infrastructure for the EPAD Register EPAD 01-03-2019 http://ep-ad.org/mdocs-posts/wp3-deliverable-3-8-final-version-of-data-discovery-software-and-related-infrastructure-for-the-epad-register/
D4.1 Report on standardisation and harmonisation of EPAD Trial Delivery Centres EPAD 22-10-2015 http://ep-ad.org/mdocs-posts/wp4-deliverable-4-1-report-on-standardisation-and-harmonisation-of-epad-trial-delivery-centres/
D4.2 (Template) EPAD LCS Agreement EPAD 15-03-2016 http://ep-ad.org/mdocs-posts/wp4-deliverable-4-2-template-epad-lcs-agreement/
D4.3 EPAD Cohort study data infrastructure EPAD 01-03-2017 http://ep-ad.org/mdocs-posts/wp4-deliverable-4-3-epad-cohort-study-data-infrastructure/
D4.4 Report on the Infrastructure and Software for the Project’s Analytical Database EPAD 25-03-2016 http://ep-ad.org/mdocs-posts/wp4-deliverable-4-4-report-on-the-infrastructure-and-software-for-the-projects-analytical-database/
D4.5 Data and Knowledge Management Plan EPAD 31-03-2017 http://ep-ad.org/mdocs-posts/wp4-deliverable-4-5-data-and-knowledge-management-plan/
D4.6 EPAD Cohort Protocol with regulatory advice and ethics committee approval EPAD 02-08-2016 http://ep-ad.org/mdocs-posts/wp4-deliverable-4-6-epad-cohort-protocol-with-regulatory-advice-and-ethics-committee-approval/
D4.7 Master Protocol complete for Trial Platform EPAD 16-06-2018 http://ep-ad.org/mdocs-posts/wp4-deliverable-4-7-master-protocol-complete-for-trial-platform/
D4.10 Start of quarterly EPAD Cohort recruitment update on EPAD website EPAD 16-02-2017 http://ep-ad.org/mdocs-posts/wp4-deliverable-4-10-start-of-quarterly-epad-cohort-recruitment-update-on-epad-website/
D4.13 Update Data and Knowledge Management Plan EPAD 29-11-2018 http://ep-ad.org/mdocs-posts/wp4-deliverable-d4-13-update-data-and-knowledge-management-plan/
D4.14 Update on EPAD Trial Delivery Centres and PI network activities EPAD 18-02-2019 http://ep-ad.org/mdocs-posts/wp4-deliverable-4-14-update-on-epad-trial-delivery-centres-and-pi-network-activities/
D5.1 Restricted Website and Tools for Internal Collaboration and Communication EPAD 23-02-2015 http://ep-ad.org/mdocs-posts/wp5-deliverable-5-1-restricted-website-and-tools-for-internal-collaboration-and-communication/
D5.2 EPAD Project Handbook EPAD 19-06-2015 http://ep-ad.org/mdocs-posts/wp5-deliverable-5-2-epad-project-handbook/
D5.5 Project Assessment EPAD 23-01-2018 http://ep-ad.org/mdocs-posts/wp5-deliverable-5-5-project-assessment/
D6.1 Initial Communication Plan, including project branding and policies EPAD 29-07-2015 http://ep-ad.org/mdocs-posts/wp6-deliverable-6-1-initial-communication-plan-including-project-branding-and-policies/
D6.2 Initial Report on communication tools and material EPAD 29-02-2016 http://ep-ad.org/mdocs-posts/wp6-deliverable-6-2-initial-report-on-communication-tools-and-material/
D6.3 Interim report on dissemination activities EPAD 17-07-2017 http://ep-ad.org/mdocs-posts/wp6-deliverable-6-3-interim-report-on-dissemination-activities/
D6.4 Updated communications plan, tools and materials EPAD 29-03-2018 http://ep-ad.org/mdocs-posts/wp6-deliverable-6-4-updated-communications-plan-tools-and-materials/
D7.1 Establishment of a Business Leadership Committee EPAD 16-04-2015 http://ep-ad.org/mdocs-posts/wp7-deliverable-7-1-establishment-of-a-business-leadership-committee/
D7.2 Analysis of existing public-private partnerships EPAD 21-12-2015 http://ep-ad.org/mdocs-posts/wp7-deliverable-7-2-analysis-of-existing-public-private-partnerships/
D7.3 Stakeholder Analysis EPAD 27-06-2016 http://ep-ad.org/mdocs-posts/wp7-deliverable-7-3-stakeholder-analysis/
D7.4 Configuration of a Pre-Competitive Space, IPR Handling and Business Flows EPAD 04-12-2017 http://ep-ad.org/mdocs-posts/wp7-deliverable-7-4-configuration-of-a-pre-competitive-space-ipr-handling-and-business-flows/
D7.5 Workflows and Procedures of the EPAD Network Centers EPAD 15-05-2017 http://ep-ad.org/mdocs-posts/wp7-deliverable-7-5-workflows-and-procedures-of-the-epad-network-centers/
D7.6 Business Plan v1 EPAD 19-12-2018 http://ep-ad.org/mdocs-posts/wp7-deliverable-7-6-business-plan-v1/
D8.1 Initial ethics policy review and information governance framework EPAD 29-02-2016 http://ep-ad.org/mdocs-posts/wp8-deliverable-8-1-initial-ethics-policy-review-and-information-governance-framework/
D8.2 Guidance on recruitment into EPAD LCS from Parent cohort studies EPAD 15-03-2016 http://ep-ad.org/mdocs-posts/wp8-deliverable-8-2-guidance-on-recruitment-into-epad-lcs-from-parent-cohort-studies/
D8.3 Report on Research participant Panel EPAD 18-07-2016 http://ep-ad.org/mdocs-posts/wp8-deliverable-8-3-report-on-research-participant-panel/
D8.4 Interim report on ethical and social implications of biomarker disclosure: approaches to disclosure in EPAD EPAD 02-07-2018 http://ep-ad.org/mdocs-posts/wp8-deliverable-d8-4-interim-report-on-ethical-and-social-implications-of-biomarker-disclosure-approaches-to-disclosure-in-epad/
D1.8 Establishment of the EPAD LCS Research Access Committees EPAD 24-01-2020 http://ep-ad.org/mdocs-posts/wp1-deliverable-1-8-establishment-of-the-epad-lcs-research-access-committees/ EPAD
D8.5 Final report on ethical, legal and social implications and recommendations EPAD 08-07-2020 http://ep-ad.org/mdocs-posts/wp8-deliverable-8-5-final-report-on-ethical-legal-and-social-implications-and-recommendations/
D1.7 Final assessment for sustained EPAD Cohort and Trials EPAD 06-07-2020 http://ep-ad.org/mdocs-posts/wp1-deliverable-1-7-final-assessment-for-sustained-epad-cohort-and-trials/
D1.9 EPAD Research Access Process (ERAP) Operational Report EPAD 04-09-2020 http://ep-ad.org/mdocs-posts/wp1-deliverable-1-9-epad-research-access-process-erap-operational-report/
D2.10 Final report on integrative data mining, including software updates EPAD 13-07-2020 http://ep-ad.org/mdocs-posts/wp2-deliverable-2-10-final-report-on-integrative-data-mining-including-software-updates/
D2.7 Update to the design based on disease-risk model and scientific reassessment EPAD 11-10-2020 http://ep-ad.org/mdocs-posts/wp2-deliverable-2-7-update-to-the-design-based-on-disease-risk-model-and-scientific-reassessment/
D3.9 Final Report on EPAD Register EPAD 18-09-2020 http://ep-ad.org/mdocs-posts/wp3-deliverable-3-9-final-report-on-epad-register/
D6.5 Impact and Evaluation Report EPAD 03-11-2020 http://ep-ad.org/mdocs-posts/wp6-deliverable-6-5-impact-and-evaluation-report/
D7.7 Business Plan v2 EPAD 02-07-2020 http://ep-ad.org/mdocs-posts/wp7_deliverable-7-7_business-plan-v2/
Title First author last name Year Project Link Keywords  
Detecting cognitive changes in preclinical Alzheimer's disease: A review of its feasibility Mortamais 2016 EPAD http://dx.doi.org/10.1016/j.jalz.2016.06.2365 Review article, Cognition, Neuropsychology, Alzheimer's disease, Diagnosis, Preclinical markers
Ethical challenges in preclinical Alzheimer's disease observational studies and trials: results of the Barcelona summit Molinuevo 2016 EPAD https://doi.org/10.1016/j.jalz.2016.01.009 Conference proceedings, Alzheimer's disease, Preclinical AD, Ethics, Asymptomatic
Associations Between Multimorbidity and Cerebrospinal Fluid Amyloid: A Cross-Sectional Analysis of the European Prevention of Alzheimer’s Dementia (EPAD) V500.0 Cohort Stirland 2019 EPAD https://doi.org/10.3233/JAD-190222 Clinical research paper, Alzheimer’s disease, amyloid, dementia, multimorbidity
At, with and beyond risk: expectations of living with the possibility of future dementia Milne 2018 EPAD https://doi.org/10.1111/1467-9566.12731 Psychosocial research paper, biomedicine, dementia / Alzheimer’s, genetic risk, prevention, risk, ethics / bioethics
Brain Amyloid Pathology and Cognitive Function Alzheimer Disease Without Dementia? Visser 2017 EPAD http://dx.doi.org/10.1001/jama.2017.6895 Editorial, Alzheimer's disease, amyloid, biomarker, brain imaging
Development of interventions for the secondary prevention of Alzheimer’s dementia: the European Prevention of Alzheimer’s Dementia (EPAD) project Ritchie 2015 EPAD http://dx.doi.org/10.1016/S2215-0366(15)00454-X Opinion paper, Alzheimer's disease, dementia, longitudinal cohort, IMI
Ethical Arguments Concerning the Use of Alzheimer's Disease Biomarkers in Individuals with No or Mild Cognitive Impairment: A Systematic Review and Framework for Discussion Smedinga 2018 EPAD http://dx.doi.org/10.3233/JAD-180638 Systematic review, Alzheimer’s disease, bioethical issues, biomarkers, disclosure, early diagnosis, ethics
Ethical issues in the development of readiness cohorts in Alzheimer’s disease research Milne 2017 EPAD http://dx.doi.org/10.14283/jpad.2017.5 Recommendations, Ethics, recruitment, readiness cohort, consent, disclosure, Alzheimer’s disease.
European Prevention of Alzheimer's Dementia Registry: Recruitment and prescreening approach for a longitudinal cohort and prevention trials Vermunt 2018 EPAD https://doi.org/10.1016/j.jalz.2018.02.010 Clinical research paper, Preclinical AD, Prodromal AD, Clinical trial, Participant recruitment, Research registry, EPAD
European Prevention of Alzheimer’s Dementia Longitudinal Cohort Study (EPAD LCS): study protocol Solomon 2018 EPAD http://dx.doi.org/10.1136/bmjopen-2017-021017 Clinical study protocol, longitudinal cohort study, Alzheimer's disease, preclinical, prodromal, biomarker, cognitive
Evolution and future directions for the concept of mild cognitive impairment Saunders 2017 EPAD http://dx.doi.org/10.1017/S1041610217002812 Editorial, MCI, Alzheimer's disease, dementia, clinical diagnosis
Medial temporal lobe atrophy and posterior atrophy scales normative values Cotta Ramusino 2019 EPAD https://doi.org/10.1016/j.nicl.2019.101936 Clinical research paper, Medial temporal atrophy, Posterior atrophy, Normative values, Magnetic resonance imaging, Visual assessment
Multi-study validation of data-driven disease progression models to characterize evolution of biomarkers in Alzheimer's disease Archetti 2019 EPAD https://doi.org/10.1016/j.nicl.2019.101954 Clinical research paper, Alzheimer's disease, Event-based models, Inter-cohort validation, Biomarkers progression, Patient staging
On the personal utility of Alzheimer’s disease-related biomarker testing in the research context Bunnik 2018 EPAD http://dx.doi.org/10.1136/medethics-2018-104772 Medical ethics paper, biomarkers, Alzheimer's disease, ethics, diagnosis
Perspectives on Communicating Biomarker-Based Assessments of Alzheimer’s Disease to Cognitively Healthy Individuals Milne 2018 EPAD http://dx.doi.org/10.3233/JAD-170813 Review article, Biomarkers, disclosure, focus groups, ethics, qualitative research
Psychological, behavioral and social effects of disclosing Alzheimer’s disease biomarkers to research participants: a systematic review Bemelmans 2016 EPAD http://dx.doi.org/10.1186/s13195-016-0212-z Systematic review, Alzheimer’s disease, Biomarkers, Disclosure, Risk, Psychological effects, Behavioral effects, Social effects, Prevention studies, Clinical research, Ethics
Recommended cognitive outcomes in preclinical Alzheimer’s disease: Consensus statement from the European Prevention of Alzheimer’s Dementia project Ritchie 2016 EPAD http://dx.doi.org/10.1016/j.jalz.2016.07.154 Recommendations, Alzheimer's disease, Preclinical, Cognition, Neuropsychology
Research participants as collaborators: Background, experience and policies from the PREVENT Dementia and EPAD programmes Gregory 2018 EPAD https://doi.org/10.1177/1471301218789307 Psychosocial research paper, patient and public involvement, dementia, prevention, longitudinal cohort study
Secondary prevention of Alzheimer’s dementia: neuroimaging contributions Ten Kate 2018 EPAD https://doi.org/10.1186/s13195-018-0438-z Review article, Alzheimer’s disease, Neuroimaging, Secondary prevention, Clinical trials
The Rationale Behind the New Alzheimer’s Disease Conceptualization: Lessons Learned During the Last Decades Molinuevo 2018 EPAD http://dx.doi.org/%2010.3233/JAD-170698 Review article, Alzheimer’s disease, biomarkers, continuum, ethical challenges, preclinical, prevention
Cognitive Functions as Predictors of Alzheimer’s Disease Biomarker Status in the European Prevention of Alzheimer’s Dementia Cohort Terrera 2020 EPAD https://content.iospress.com/articles/journal-of-alzheimers-disease/jad191108 Clinical research paper, Alzheimer’s disease, amyloid-β, biomarkers, cognition, diagnosis, neuropsychology, tau
Prescreening for European Prevention of Alzheimer Dementia (EPAD) trial-ready cohort: impact of AD risk factors and recruitment settings Vermunt 2020 EPAD https://doi.org/10.1186/s13195-019-0576-y Clinical research paper, Alzheimer's disease, recruitment, clinical trial, risk factors
The European Prevention of Alzheimer’s Dementia (EPAD) Longitudinal Cohort Study: Baseline Data Release V500.0 Ritchie 2019 EPAD https://doi.org/10.14283/jpad.2019.46 EPAD, Cohort, Alzheimer’s disease, Prevention, Disease modelling
Re-aligning scientific and lay narratives of Alzheimer's disease Frisoni 2019 EPAD https://doi.org/10.1016/S1474-4422(19)30323-0 Alzheimer's disease, language
Cognitive Dispersion is not Associated with Cerebrospinal Fluid Biomarkers of Alzheimer’s Disease: Results from the European Prevention of Alzheimer’s Dementia (EPAD) v500.0 Cohort Watermeyer 2020 EPAD http://dx.doi.org/10.3233/JAD-200514 Aging, Alzheimer’s disease, amyloid, cognition, risk factors, tau
Involving research participants in a pan-European research initiative: the EPAD participant panel experience Gregory 2020 EPAD https://doi.org/10.1186/s40900-020-00236-z Involvement, Cohort, Participant panel, At-risk, Readiness, European
Precision prevention of Alzheimer's and other dementias: Anticipating future needs in the control of risk factors and implementation of disease-modifying therapies Frisoni 2020 EPAD https://doi.org/10.1002/alz.12132
Prediction of Alzheimer's disease biomarker status defined by the 'ATN framework' among cognitively healthy individuals: results from the EPAD longitudinal cohort study Calvin 2020 EPAD https://doi.org/10.1186/s13195-020-00711-5 ATN framework, Risk scores, White matter lesions volume.
Altered awareness of cognitive and neuropsychiatric symptoms in Parkinson's disease and Dementia with Lewy Bodies: A systematic review Pennington 2020 EPAD https://doi.org/10.1002/gps.5415 anosognosia, Dementia with Lewy bodies, insight, metacognition, Parkinson's disease, Parkinson's disease dementia, symptom awareness
Evaluating the Alzheimer's disease data landscape Birkenbihl 2020 EPAD https://doi.org/10.1002/trc2.12102 Alzheimer's disease, biomarker, clinical study, cohort, cohort study, data, data access, data sharing, data viewer, data‐driven, data set, dementia, disease modeling, FAIR data, magnetic resonance imaging, open‐science, patient level data,
The influence of diversity on the measurement of functional impairment: An international validation of the Amsterdam IADL Questionnaire in eight countries Dubbelman 2020 EPAD https://doi.org/10.1002/dad2.12021 Alzheimer's disease, cross‐cultural validation, dementia, differential item functioning, diversity, functional decline, instrumental activities of daily living, item response theory
The relation between APOE genotype and cerebral microbleeds in cognitively unimpaired middle- and old-aged individuals Ingala 2020 EPAD https://doi.org/10.1016/j.neurobiolaging.2020.06.015 APOE; Alzheimer’s disease (AD); Cerebral microbleeds (CMBs); Magnetic resonance imaging (MRI); White matter hyperintensities (WMH).
Application of the ATN classification scheme in a population without dementia: Findings from the EPAD cohort Ingala 2021 EPAD https://doi.org/10.1002/alz.12292 Alzheimer's disease (AD), amyloid beta, amyloid/tau/neurodegeneration (ATN) staging, cognition, European Prevention of Alzheimer's Dementia (EPAD), magnetic resonance imaging (MRI), neurodegeneration, neuroimaging, tau,
"Ready for What?”: Timing and Speculation in Alzheimer’s Disease Drug Development Brenman 2021 EPAD https://doi.org/10.1177/01622439211007196 clinical trials, Alzheimer’s disease, ethics, speculation, time, readiness
Disease Modelling of Cognitive Outcomes and Biomarkers in the European Prevention of Alzheimer’s Dementia Longitudinal Cohort Howlett 2021 EPAD https://doi.org/10.3389/fdata.2021.676168 Alzheimer’s disease, biomarkers, cognitive functioning, disease modelling, European prevention of Alzheimer’s dementia, latent class mixed models, precision medicine, Bayesian profile regression
Lived time and the affordances of clinical research participation Brenman 2021 EPAD https://doi.org/10.1111/1467-9566.13374
Lived time and the affordances of clinical research participation Brenman 2021 EPAD https://doi.org/10.1111/1467-9566.13374 affordances; dementia; motivations; research participation; temporality.
Assessing and disclosing test results for ‘mild cognitive impairment’: the perspective of old age psychiatrists in Scotland Saunders 2022 EPAD https://doi.org/10.1186/s12877-021-02693-x Risk disclosure, Pre-dementia stages, Mild cognitive impairment (MCI),
Clinical applicability of quantitative atrophy measures on MRI in patients suspected of Alzheimer’s disease Ingala 2022 EPAD https://doi.org/10.1007/s00330-021-08503-7 Alzheimer’s disease, Magnetic resonance imaging (MRI), Hippocampal volume (HCV), Gray matter volume (GMV), Visual rating scales
The Open-Access European Prevention of Alzheimer’s Dementia (EPAD) MRI dataset and processing workflow Luigi 2022 EPAD https://doi.org/10.1016/j.nicl.2022.103106 Magnetic resonance imaging, EPAD, Image analysis pipeline, Multi-modal data integration, Quality control
Interactions between apolipoprotein E, sex, and amyloid-beta on cerebrospinal fluid p-tau levels in the European prevention of Alzheimer's dementia longitudinal cohort study (EPAD LCS) Saunders 2022 EPAD https://doi.org/10.1016/j.ebiom.2022.104241 Cerebrospinal fluid, Alzheimer disease, Apolipoprotein E, Tau proteins, Amyloid
Self-reported diabetes is associated with allocentric spatial processing in the European Prevention of Alzheimer's Dementia Longitudinal Cohort Study Gregory 2022 EPAD https://doi.org/10.1111/ejn.15821 Alzheimer’s disease; Significance Statement; cohort study; diabetes; prevention; risk factor
Title Description Type Project  
Longitudinal Cohort Study (LCS)

The EPAD LCS is an ongoing prospective, multicentre, pan-European longitudinal cohort study. Participants are recruited mainly from existing parent cohorts across Europe to form a ‘probability-spectrum’ population covering the entire continuum of anticipated probability for Alzheimer’s dementia development. The primary objective of the EPAD LCS is to be a readiness cohort for the EPAD PoC trial though a second major objective is to generate a comprehensive and large data set for disease modelling of preclinical and prodromal Alzheimer’s disease. The number of research participants is 1991 (Last update January 2020). The LCS is led by University of Edinburgh. For more information, please visit:

http://ep-ad.org/open-access-data/overview/

cohort-clinical-epad-3 EPAD
Clinical, biomarker and neuroimaging data from the EPAD LCS study

The EPAD LCS data is made available in secure online Workspaces in order to facilitate collaboration between people and teams with similar research aims. The dataset definition document can be accessible on the ERAP page of the EPAD website along with the different versions of the EPAD protocol, videos and tutorial to access the data. For more information, please visit:

http://ep-ad.org/erap/

dataset-clinical-epad-11 EPAD
Longitudinal Cohort Study biosamples

The EPAD LCS is an ongoing prospective, multicentre, pan-European longitudinal cohort study. Participants are recruited mainly from existing parent cohorts across Europe to form a ‘probability-spectrum’ population covering the entire continuum of anticipated probability for Alzheimer’s dementia development. The EPAD LCS study has collected CSF, blood, urine and saliva samples in its BioBank, currently located at the Roslin Research Institute at the University of Edinburgh. These samples will be used for future biomarker assessments (emerging AD biomarkers). For more information please see:

https://bmjopen.bmj.com/content/8/12/e021017

biological-samples-clinical-epad-6 EPAD
Trial Delivery Centre (TDC) network

The EPAD Trial Delivery Centre (TDC) network is formed by the TDCs contributing to the EPAD LCS study and intending to participate in the EPAD PoC study. EPAD currently has 28 study sites and plans to initiate 40 TDCs prior to the end of the IMI funding period (June 2020). The TDCs that are part of the TDC network have been certified and approved by the Chief Investigator (CI) & the Sponsor (UEDIN). For more information please visit:

http://ep-ad.org/for-research-participants/why-participate-in-epad/trial-locations/

platform-clinical-epad-3 EPAD
The EPAD Register

The EPAD register is a pan-European register of over half a million people across the risk spectrum for dementia, led by VUMC and Pfizer. It has been developed to function as a reservoir of potential research participants for the EPAD LCS study. It is made up of a set of collaborating Parent Cohorts (PCs) across Europe that remain independent and secure, but simultaneously constitute a ‘virtual’ collection of subjects from which suitable participants can be discovered and selected, on the basis of known risk factors and markers, for the trial-ready LCS. The EPAD Register will also be the main source of recruitment to EPAD PoC from 2021. For more information please visit:

https://doi.org/10.1016/j.jalz.2018.02.010

http://ep-ad.org/the-epad-platform/the-epad-platform/

platform-clinical-epad-4 EPAD
Proof of Concept Trial Platform

The EPAD PoC trial platform is available to any pharmaceutical company or biotech interested in testing a compound in PhII for the prevention of AD. It uses the TDC network, recruits from EPAD LCS and EPAD Register. The PoC Platform facilitates for different Intervention Owners to run their Appendix on the PoC trial, with the University of Edinburgh as the trial Sponsor and IQVIA as the Trial CRO. The PoC trial platform is based on a Master PoC Protocol and Intervention Owner-specific Appendices. The PoC trial allows an adaptive design including an equal randomisation across Appendices and a 3:1 randomisation within each Appendix to active treatment and placebo. Within the PoC trial, placebo arms can be shared across different Intervention Owners. Intervention Owners can approach EPAD by email epad.poc@ed.ac.uk. For more information, please visit:

http://ep-ad.org/for-intervention-owners/epad-benefits/ 

platform-clinical-epad-5 EPAD
Participant Registry in EPAD (PREPAD) tool

Creation of the EPAD register has also generated an array of software tools and processes, including the PREPAD tool for federated discovery of suitable subjects (‘Participant Registry in EPAD’). In addition, Aridhia has created a monitoring application for batch-level tracking of all pre-screening steps two databases for checking and integration of all Registry activities at the subject level (the ‘Central Archive’ and ‘Current Status’ databases), as well as custom scripts for data transformation and harmonisation. For more information, please visit:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6318591/

tools-clinical-epad-4 EPAD
DerIDIOM tool

Creation of the EPAD register has also generated an array of software tools and processes, including the DerIDIOM tool for ID encryption and matching ('DerID Input Output Management'). In addition, Aridhia has created a monitoring application for batch-level tracking of all pre-screening steps two databases for checking and integration of all Registry activities at the subject level (the ‘Central Archive’ and ‘Current Status’ databases), as well as custom scripts for data transformation and harmonisation. For more information, please visit:

http://ep-ad.org/?mdocs-file=958

tools-clinical-epad-5 EPAD
VElocity for EPAD (VEEPAD) tool

Creation of the EPAD register has also generated an array of software tools and processes, including the VEEPAD tool for rapid controlled registration of high-value subjects (‘VElocity for EPAD’). In addition, Aridhia has created a monitoring application for batch-level tracking of all pre-screening steps two databases for checking and integration of all Registry activities at the subject level (the ‘Central Archive’ and ‘Current Status’ databases), as well as custom scripts for data transformation and harmonisation. For more information, please visit:

http://ep-ad.org/

tools-clinical-epad-6 EPAD
Subject Enrolment in EPAD (SEEPAD) tool

Creation of the EPAD register has also generated an array of software tools and processes, including the SEEPAD tool for semi-real-time and historical visual exploration of the Register and enrolment activities (‘Subject Enrolment in EPAD’ or SEEPAD). In addition, Aridhia has created a monitoring application for batch-level tracking of all pre-screening steps two databases for checking and integration of all Registry activities at the subject level (the ‘Central Archive’ and ‘Current Status’ databases), as well as custom scripts for data transformation and harmonisation. For more information, please visit:

http://ep-ad.org/?wysija-page=1&controller=email&action=view&email_id=29&wysijap=subscriptions

tools-clinical-epad-7 EPAD
Ethics work on biomarker disclosure

One of the objectives of EPAD is to investigate the ethical, legal and social implications of disclosure of biomarker results and the associated risk of AD dementia. This work has been reported in WP8 Deliverable 8.4 – Interim report on ethical and social implications of biomarker disclosure: approaches to disclosure in EPAD and in a number of scientific publications. For more information, please visit:

http://ep-ad.org/mdocs-posts/wp8-deliverable-d8-4-interim-report-on-ethical-and-social-implications-of-biomarker-disclosure-approaches-to-disclosure-in-epad/

tools-clinical-epad-8 EPAD
Procedures for trial delivery centre certification, agreement template, etc.

EPAD WP4 focuses on the selection and certification of the EPAD trial delivery centres, and the EPAD Cohort protocol early in the project, as well as the design and execution of the Proof-of-Concept (PoC) study. The team also oversees the execution of the protocols for the EPAD cohort and trials and work with National/Regional Leads and Clinical Research Organisations (CROs) on qualification, establishment and training of the EPAD trial delivery centres. For more information, please visit:

http://ep-ad.org/mdocs-posts/wp4-deliverable-4-14-update-on-epad-trial-delivery-centres-and-pi-network-activities/

tools-clinical-epad-9 EPAD
Research Participant Panel

EPAD has established an open dialogue with participants in the EPAD studies, giving them an active role in influencing the design, conduct and reporting of research. The research participant panel involves a small group of EPAD research participants from several European countries who participate in regular meetings to identify issues associated with participation, disclosure, consent and privacy. The Participant Panel provides feedback on the study experience, reviewing study documentation and acting as participant representatives in decision-making processes that directly affect them. For more information, please visit:

http://ep-ad.org/for-research-participants/epad-cohort-study/the-research-participant-panel/

ttps://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/approaches-to-the-communication-of-alzheimers-disease-risk-acar/

sem-clinical-epad-1 EPAD
EPAD Academy

The EPAD Academy aims to efficiently leverage EPAD resources to foster and develop academic research capacity and output in AD across Europe for maximum global impact. Mission: (1) to help create the next generation of AD researchers and thought leaders, by creating and facilitating opportunities for junior researchers’ career advancement, (2) to create fair and efficient procedures for EPAD and non-EPAD research teams to access EPAD data, samples and research participants with the objective of deepening the understanding of AD onset and progression, and the factors contributing to underlying processes and (3) to support the EPAD academic output in terms of scientific publications, participation in conferences and development of guidelines and studies, and to maximise their visibility and impact. It is led by CHUT. For more information, please visit: 

http://ep-ad.org/epad-academy/
 

training-clinical-epad-1 EPAD

 

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