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First session of the Alzheimer’s Association Academy takes place online

Tuesday 10 November 2020

On 10 November, Alzheimer Europe (AE) hosted an online workshop as part of its 2020 Alzheimer’s Association Academy (AAA). The topic for the workshop, which was chaired by Dianne Gove (Alzheimer Europe) was “Involving people with dementia in the development of and in research linked to medicinal products”. Representatives of member associations from fourteen countries, two members of the European Working Group of People with Dementia (EWGPWD), some representatives from pharmaceutical companies, and AE staff participated in the AAA workshop.

The session included five presentations on the topics of:  “Public involvement in the development of medicines: main conclusions and outcomes of the PARADIGM project” (Ana Diaz, Alzheimer Europe); “The value of involving people with dementia in defining outcome measures for research studies in the RADAR-AD project” (Andrew Owens, King’s College London); “Perspectives of partnering with people with dementia and carers in Roche clinical trials” (Lea Proulx, Roche); “Patient involvement in Health Technology Assessment” ( Neil Bertelsen, HTAi); and “The perspective of people affected by dementia on public involvement” (Jayne Goodrick, Carers Advisory Panel for Dementia Carers Count).

In the session, speakers referred to the importance and great value of involving people with dementia and their carers across all stages of medicines development. It showcased examples of tools and different approaches for involving people affected by dementia in this process. It was also highlighted how public involvement in research can empower people with lived experience of dementia and help to ensure that the outcomes of research projects are of value and relevance to them.

The presentations were followed by an interactive Q&A discussion, during which questions from the audience were addressed by the panel, including queries on the concrete outcomes of public involvement, and how to ensure that governments recognise the value of public involvement. This AAA session was organised as part of the PARADIGM and RADAR-AD projects which have received funding from the Innovative Medicines Initiative 2 Joint Undertaking under Grant Agreement No 777450 and 806999.