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Approaches to the communication of Alzheimer's disease risk (ACAR)

  • Research type

    Research Study

  • Full title

    Public perspectives on approaches to the communication of Alzheimer's disease risk to asymptomatic individuals

  • IRAS ID

    187546

  • Contact name

    Richard Milne

  • Contact email

    rjm231@medschl.cam.ac.uk

  • Sponsor organisation

    University of Cambridge

  • Duration of Study in the UK

    0 years, 5 months, 1 days

  • Research summary

    Research suggests that the development of Alzheimer’s disease is a long-term process that precedes the onset of symptoms by as much as two decades. Much research is currently ongoing to identifying biological signs that may indicate susceptibility to Alzheimer’s disease. This information is used to identify people who may benefit from clinical trials that target very early stages of illness.

    In order to enable people to make informed decisions about whether to participate in clinical trials, studies should be transparent about the reasons for contacting them. However, in the case of Alzheimer’s disease, which is currently untreatable, information about elevated risk is potentially harmful to the recipient. Although there is evidence that there do not seem to be severe psychological consequences of disclosure, the vast majority of this research has taken place in North America, while survey evidence suggests that attitudes towards learning your Alzheimer’s disease risk status vary significantly between countries.

    This qualitative research project will explore how people in the UK understand Alzheimer’s disease risk, what they would see as the potential implications of learning their risk status and what their expectations of the disclosure process would be. The research is funded as part of the European Innovative Medicines Initiative European Prevention of Alzheimer’s Dementia (EPAD) project. It will directly inform the development of approaches to risk disclosure within clinical trials conducted in the EPAD project.

  • REC name

    East of England - Cambridge Central Research Ethics Committee

  • REC reference

    15/EE/0381

  • Date of REC Opinion

    2 Oct 2015

  • REC opinion

    Further Information Favourable Opinion