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P4. ROADMAP: Disease outcomes

Detailed programme, abstracts and presentations

What matters to whom as AD progresses? Relevant outcomes in disease progression

SMITH Michael1, TOCHEL Claire1, BINTENER Christophe2, BEXELIUS Christin3, Member of the EWGPWD

1University of Edinburgh, Edinburgh, United Kingdom, 2Alzheimer Europe, Luxembourg, Luxembourg, 3Roche, Basel, Switzerland

Alzheimer’s disease and other dementia-related diseases are affecting more and more people, as the population is getting older. Due to the increasing number of people affected by the condition, the need for new treatment alternatives and better care plans is higher than ever before, both for people living with dementia and their families but also for society at large.

In order to be able to better evaluate new emerging interventions, systems that can take into account all available healthcare information - often referred to as real-world data (RWD) - are needed. ROADMAP is a project bringing together 26 partners from across Europe, aiming to investigate how such systems should be set up to meet the needs from different stakeholders, including regulatory bodies and payers. The ROADMAP work stream “Outcome Definition” aimed to identify a priority set of real-world dementia outcomes, focussing on AD, across the disease spectrum, from a diversity of stakeholder perspectives.

To achieve this, a systematic literature review and a survey were conducted. In addition, PPI consultations were carried out including among others the views of people with dementia and their carers.

The aim of this session is to present an overview of the full work process including preparation of PPI consultations, methods used and the results. The outlook focusses on how these results as well as the patients’ and caregivers’ voices could impact public decision-making.



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