Survey for dementia patients, carers and researchers

31st Jan 2018

Invitation to participate in the ROADMAP survey

We would like to invite you to complete our brief survey that aims to obtain views on the importance of different aspects that relate to mild cognitive impairment and dementia so that we can assess meaningful change in disease progression. Please click here to access the survey.

The Real world Outcomes across the Alzheimer’s disease (AD) spectrum for better care: Multi-modal data Access Platform (ROADMAP) project, is a European research consortium comprising leading academic institutions, industry partners and organisations such as the National Institute for Health and Care Excellence (NICE) and Alzheimer Europe. The overall aim of ROADMAP is to effectively use Europe wide real world evidence (RWE) data to improve the lives of people with dementia, with a particular focus on Alzheimer’s disease, and to prevent individuals from developing the disease. There is great potential for RWE data is to be leveraged for informed consensus and decision-making; to this end ROADMAP is developing a European wide data platform and framework for use of RWE data related to AD across the spectrum. For more information about the ROADMAP project, please visit our ROADMAP website.

We would like people with dementia, their carers, clinicians, scientists, payers, health economists, and others concerned with dementia in their professional capacity, to complete our surveys as we are interested in identifying important aspects of dementia for assessing meaningful change in disease progression from multiple perspectives. Meaningful change in disease progression signals increasing severity of having dementia that impacts the person with dementia’s life in a way that inhibits them from continuing to live their life as they were able to before having the condition. Aspects of having dementia that we ask you to assess in relation to meaningful change in our survey include: cognition, independence in complex daily activities, their use of health and social services, quality of life and the quality of their carer’s and family’s lives. To begin completing the survey, you can also click here.

If you have any questions about the ROADMAP survey, please contact wp2.survey@roadmap-alzheimer.org

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