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Research participants as collaborators: Background, experience and policies from the PREVENT Dementia and EPAD programmes

Sarah Gregory, Katie Wells, Kate Forysth, Cate Latto, Helen Szyra, Stina Saunders, Craig W Ritchie, Richard Milne
Dementia Journal. 2018
10.1177/1471301218789307

Perspectives on Communicating Biomarker-Based Assessments of Alzheimer’s Disease to Cognitively Healthy Individuals.

Milne R, Bunnik E, Diaz A, Richard E, Badger S, Gove D, Georges J, Fauria K, Molinuevo JL, Wells K, Ritchie C.
Journal of Alzheimer’s Disease. 2018
10.3233/JAD-170813

PREVENT participants took part in organised group discussions around the benefits, harms and rights of an individual finding out information from biological measurements that may inform their personal risk of Alzheimer’s disease.

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At, with and beyond risk: expectations of living with the possibility of future dementia.

Milne R, Diaz A, Badger S, Bunnik E, Fauria K, Wells K.
Sociology of health & illness. 2017.
10.1111/1467-9566.12731

Focus groups were held with PREVENT participants to develop discussions around disclosure of dementia risk.

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The PREVENT research programme–a novel research programme to identify and manage midlife risk for dementia: the conceptual framework.

Ritchie CW, Wells K, Ritchie K.
International Review of Psychiatry. 2013
10.3109/09540261.2013.869195

This article outlines the vision of the PREVENT study and how, through in depth study of people in their mid-life, PREVENT can generate novel evidence to inform future interventional trials and improve future care.

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The PREVENT study: a prospective cohort study to identify mid-life biomarkers of late-onset Alzheimer’s disease.

Ritchie CW, Ritchie K.

BMJ open. 2012

10.1136/bmjopen-2012-001893

This publication describes the importance of developing a study to investigate markers present in midlife that could identify people at increased risk for later life dementia.

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