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ROADMAP's publication repository 05 Nov 2018

The ROADMAP Consortium has already published a number of peer-reviewed publications and is working on a range of further papers that are soon to be published in a variety of journals. All of these are – respectively will be – available through ROADMAP’s publication repository. Click on the following link to find those already available and make sure to follow the project page to be among the first to receive updates: https://www.researchgate.net/project/ROADMAP-Real-world-outcomes-across-the-AD-spectrum-for-better-care-multi-modal-data-access-platform

The publications include:

  • A general ROADMAP introduction focussing on challenges for the optimisation of real-world evidence in Alzheimer’s disease

Outcomes Team

  • Priority outcomes for Alzheimer’s Disease in European Health Technology Assessments
  • Involving people with dementia, carers and professionals in the development of the ROADMAP data platform
  • What Outcomes Matter to People with Dementia, Their Carers, and Professionals? Insights from ROADMAP Survey
  • Identifying a priority set of stakeholder relevant outcomes: a mixed methods analysis
  • What outcomes are important to patients with Mild Cognitive Impairment or Alzheimer’s disease, their caregivers and healthcare professionals? A systematic review

Real-world evidence team

  • The utility of digital technology in Alzheimer’s disease medicine
  • Epidemiology of dementia: prevalence and incidence estimates using validated electronic health records from primary care

Health Economics team

  • Resource utilisation and costs in pre-dementia and dementia – systematic literature review
  • Health-related quality of life in people with pre-dementia or dementia measured with preference based instruments
  • Attributes for an economic model of Alzheimer’s Disease: an agreed model specification from academic, industry and reimbursement perspectives
  • 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

Regulatory and HTA engagement team

Ethical, Legal and Social Implication team

  • Clinical trial data sharing: Justifications for increased transparency and access to data in four general medical journals
  • A protocol of as well as the systematic review on predictive modelling for preventive approaches to Alzheimer’s Disease: ethical concerns and social implications
  • Trust, Protection and Engagement: The views of the European Working Group of People with Dementia on the sharing and re-use of health data
  • Manuscript on reviewing justifications for greater sharing, transparency, and access to clinical trial data
  • A Landscaping paper on ethics of outcome prioritisation in AD treatment: “Health outcome prioritisation in Alzheimer’s Disease: understanding the ethical landscape”
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