Real world Outcomes across the AD spectrum for better care: Multimodal data Access Platform - Sofia ref.: 116020

Project Information

ROADMAP

Grant agreement ID: 116020

DOI

10.3030/116020

Project closed

EC signature date 21 December 2016

Start date 1 November 2016

End date 31 October 2018

Funded under

• SOCIETAL CHALLENGES - Health, demographic change and well-being

Total cost

€ 8 210 381,00

EU contribution

€ 3 998 250,00

Coordinated by

THE CHANCELLOR, MASTERS AND SCHOLARS OF THE UNIVERSITY OF OXFORD
United Kingdom

CORDIS provides links to public deliverables and publications of HORIZON projects.

Links to deliverables and publications from FP7 projects, as well as links to some specific result types such as dataset and software, are dynamically retrieved from OpenAIRE .

Deliverables

Documents, reports (29)

Structured review of existing C-E models and evidence

Migration

Final report on dissemination activities (including impact measures) and project tools developed

Migration

Paper on the regulatory and HTA experience with AD-approved products

Migration

Catalogue of RWE relevant AD models and simplistic disease stage framework

Migration

Overview of potential data sources with RWE data in Europe

Migration

Interim report on the EXAG activities and outputs

Migration

Landscaping paper on ethics of outcome prioritisation in AD treatment

Migration

Report on results from analysis of pharmacological interventions

Migration

Update on potential data sources with RWE data in Europe

Migration

Summary of gaps between data requirements and currently available data

Migration

Review of ELSI issues in RWE approach

Migration

Final report on proof of concept technical solutions for RWE data harmonisation and integration

Migration

Guidelines for combining RCT, cohort, and EHR-based data for RWE in AD

Migration

RWE progression marker and outcome classification matrix for AD

Migration

Guidelines for use of smart devices as a measure of RWE

Migration

Report of systematic review of published an unpublished data identifying important and relevant outcomes in AD and criteria for disease progression

Migration

Brief on findings of ELSI focus groups for RWE approach to AD

Migration

Initial set of communication tools

Migration

Guiding principles and recommendations for the development and incorporation of RWE into clinical and market access development plans for AD

Migration

Selection of appropriate disease models for validation

Migration

Final report on requirements for ELSI framework for a RWE approach in AD

Migration

First report on proof of concept technical solutions for RWE data harmonisation and integration

Migration

Interim Report on dissemination activities and communication strategy update

Migration

Report on results from ‘hypothesis-free’ disease trajectory analyses

Migration

Proof of concept AD C-E model

Migration

Mapping algorithms from real world outcomes to preference-based measures

Migration

First list of priority Real World Evidence relevant outcomes for AD

Migration

Report on results from pilot model validation exercises

Migration

Recommendations for the development/interpretation of RWE AD models

Migration

Websites, patent fillings, videos etc. (1)

Project website

Migration

Publications

Peer reviewed articles (10)

Brain Amyloid Pathology and Cognitive Function

Author(s): Pieter Jelle Visser, Betty Tijms
Published in: JAMA, Issue 317/22, 2017, Page(s) 2285, ISSN 0098-7484
Publisher: American Medical Association
DOI: 10.1001/jama.2017.6895

Resource utilisation and costs in predementia and dementia: a systematic review protocol

Author(s): Filipa Landeiro, Helena Wace, Isaac Ghinai, Elsbeth Nye, Seher Mughal, Katie Walsh, Nia Roberts, Pascal Lecomte, Raphael Wittenberg, Jane Wolstenholme, Ron Handels, Emilse Roncancio-Diaz, Michele H Potashman, Antje Tockhorn-Heidenreich, Alastair M Gray
Published in: BMJ Open, Issue 8/1, 2018, Page(s) e019060, ISSN 2044-6055
Publisher: BMJ Publishing Group
DOI: 10.1136/bmjopen-2017-019060

Big data for better outcomes: supporting health care system transformation in Europe

Author(s): Szócska, Miklós and Jayawardana, Sahan and Smand, Carin and Salimullah, Tayyab and Reed, Catherine and Hanif, Shahid
Published in: EUROHEALTH, 2017, ISSN 1356-1030
Publisher: WHO on behalf of European Observatory on Health Systems and Policies

Measuring quality of life of people with predementia and dementia and their caregivers: a systematic review protocol

Author(s): Filipa Landeiro, Katie Walsh, Isaac Ghinai, Seher Mughal, Elsbeth Nye, Helena Wace, Nia Roberts, Pascal Lecomte, Raphael Wittenberg, Jane Wolstenholme, Ron Handels, Emilse Roncancio-Diaz, Michele H Potashman, Antje Tockhorn-Heidenreich, Alastair M Gray
Published in: BMJ Open, Issue 8/3, 2018, Page(s) e019082, ISSN 2044-6055
Publisher: BMJ Publishing Group
DOI: 10.1136/bmjopen-2017-019082

Challenges in Optimising Real World Evidence for Alzheimer’s Disease

Author(s): C Reed, F de Reydet de Vulpillieres, J Gallacher
Published in: Value in Health, Issue 20/9, 2017, Page(s) A404, ISSN 1098-3015
Publisher: Blackwell Publishing Inc.
DOI: 10.1016/j.jval.2017.08.037

Systematic literature review of methodologies and data sources of existing economic models across the full spectrum of Alzheimer’s disease and dementia from apparently healthy through disease progression to end of life care: a systematic review protocol.

Author(s): Maria Karagiannidou, Raphael Wittenberg, Filipa Isabel Trigo Landeiro, A-La Park, Andra Fry, Martin Knapp, Alastair M Gray, Antje Tockhorn-Heidenreich, Amparo Yovanna Castro Sanchez, Isaac Ghinai, Ron Handels, Pascal Lecomte, Jane Wolstenholme
Published in: BMJ Open, Issue 8/6, 2018, Page(s) e020638, ISSN 2044-6055
Publisher: BMJ Publishing Group
DOI: 10.1136/bmjopen-2017-020638

Regulatory and Health Technology Assessment Considerations for Disease-Modifying Drugs in Alzheimer’s Disease

Author(s): Jacoline C. Bouvy, Pall Jonsson, Diana O’Rourke, Antonella Santuccione Chadha, Niklas Hedberg, Amr Makady, Entela Xoxi, Christine Gispen-de Wied, Anja Schiel, Raj Long, John Gallacher
Published in: CNS Drugs, Issue 32/12, 2018, Page(s) 1085-1090, ISSN 1172-7047
Publisher: Adis International Ltd.
DOI: 10.1007/s40263-018-0581-x

<p>Epidemiology of dementia: prevalence and incidence estimates using validated electronic health records from primary care</p>

Author(s): Anna Ponjoan, Josep Garre-Olmo, Jordi Blanch, Ester Fages, Lia Alves-Cabratosa, Ruth Martí-Lluch, Marc Comas-Cufí, Dídac Parramon, María Garcia-Gil, Rafel Ramos
Published in: Clinical Epidemiology, Issue Volume 11, 2019, Page(s) 217-228, ISSN 1179-1349
Publisher: Dove Medical Press Ltd
DOI: 10.2147/clep.s186590

Ethical and social implications of using predictive modeling for Alzheimer’s disease prevention: a systematic literature review protocol

Author(s): Zuzanna Angehrn, Clementine Nordon, Andrew Turner, Dianne Gove, Helene Karcher, Alexander Keenan, Monika Neumann, Jelena Sostar, Frederic de Reydet de Vulpillieres
Published in: BMJ Open, Issue 9/3, 2019, Page(s) e026468, ISSN 2044-6055
Publisher: BMJ Publishing Group
DOI: 10.1136/bmjopen-2018-026468

What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health-care professionals? A systematic review

Author(s): Claire Tochel, Michael Smith, Helen Baldwin, Anders Gustavsson, Amanda Ly, Christin Bexelius, Mia Nelson, Christophe Bintener, Enrico Fantoni, Josep Garre-Olmo, Olin Janssen, Christoph Jindra, Isabella F. Jørgensen, Alex McKeown, Buket Öztürk, Anna Ponjoan, Michele H. Potashman, Catherine Reed, Emilse Roncancio-Diaz, Stephanie Vos, Cathie Sudlow
Published in: Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring, Issue 11, 2019, Page(s) 231-247, ISSN 2352-8729
Publisher: Alzheimer and Dementia
DOI: 10.1016/j.dadm.2018.12.003