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P12. ROADMAP: Ethics challenges for AD research and practice using real-world data

Detailed programme, abstracts and presentations

ANGEHRN Zuzanna1, DIAZ Ana2, MCKEOWN Alex3

1Analytica Laser, a Certara Company, Lörrach, Germany/Basel, Switzerland, 2Alzheimer Europe, Luxembourg, Luxembourg, 3University of Oxford, Oxford, United Kingdom

Background: ROADMAP maps the critical ethical, legal and social issues which arise from creating a real-world evidence platform, re-using the existing health data and pooling data from different data sources. It also addresses ethical concerns and topics that arose during the course of the project.Zuzanna Angehrn will report on the results of a systematic literature review looking into the ethical concerns and social implications of using predictive modelling as a part of AD prevention strategies targeting people who do not have symptoms but seem to have an increased risk of developing AD in the future. The public will be asked to provide their perspective on the literature findings.

Ana Diaz will give a presentation about the consultation with the European Working Group of People with Dementia for the ROADMAP project on possible concerns that people with dementia and carers might have regarding the sharing and re-use of health data for AD research. A representative from the EWGPWD will co-present and contribute towards the discussion.

Alex McKeown will present on a recent paper that he and other members of the ROADMAP team have collaborated on in mapping the landscape of ethical issues in the prioritisation of health and treatment outcomes in AD. The paper ranges over issues for a wide range of stakeholders including people with dementia and their carers, clinicians, health economists, payers and others.






Last Updated: Tuesday 13 November 2018


  • Acknowledgements

    The 28th AE Conference in Barcelona received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe, CEAFA and Fundación Alzheimer España gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche