Although this project does not fall within the direct scope of the proposal area „Longitudinal cohort approaches in neurodegenerative diseases“, we do underscore the need to involve patients, caretakers and the public in the present EPI-AD project and will act accordingly.
There is currently no cure or effective treatment for AD. This is in part due to an incomplete understanding of the disease and the uncertainty of current diagnostic tools, which mainly rely on late-stage symptoms of the disease. By focusing on multiple stages of AD disease progression, importantly including pre-dementia stages, and looking at mechanisms that may precede classic AD pathology, this EPI-AD project aims to provide a strong foundation for the development of novel diagnostic tools and treatment strategies. If successful, the identification of AD at the pre-dementia stage and halting or slowing disease progression at this stage will lead to a considerable improvement over the current clinical situation and healthcare costs. Most importantly, preventing or delaying the onset of dementia will mean the world not only to patients themselves, but also to friends and family.
As there is no direct patient contact involved in the EPI-AD project, the PPI will be mainly directed at informing the public about the project and its progress, including an educational component to make the public more aware of the disease processes that are under investigation. By reaching out to the public and providing opportunities to have exchanges of perspectives we hope to set new standards for PPI, which not only provides the public with more insight into scientific research, but also provides those involved in the research a better picture of what the public thinks about the research.
The various groups involved in this initiative have already been and will continue to be in close communication with appropriate stakeholders including patient associations and the various partners involved in e.g. the PSI, AgeCoDe, and the DCN initiatives (see Objective III) and the DESCRIPA study, which represents a European collaborative study on the early diagnosis of AD, aiming at the development of screening guidelines and clinical criteria for AD in non-demented subjects. Along similar lines, there will be close contact with the clinical divisions of the BSHRI, which represents a world-class leader in basic and translational research, clinical care, prevention and education in AD. The members of EPI-AD will publicize and report on the activities on a wider basis, including traditional media communication, press releases, folders, video materials, project banners and web communication, including a project website. To establish a mutual beneficial ‘dialogue’ with the public, this website will not only contain general information about the structure and aims of the EPI-AD project, but will also serve as a platform for press releases and will contain more detailed information on AD and the processes studied, such as epigenetics, to educate the public on what will actually be studied. To interact with the public, the site will also contain a forum where anyone will be able to ask questions or give comments about the project. Next to the website, the public will be able to follow the progress of the project through social media such as Facebook and Twitter. To realize more personal communication with a wider audience, the following types of outreach public activities will take place: participation of fellows and university partners in the annual International Brain Awareness Week, which represents a global campaign to increase public awareness of the progress and benefits of brain research. In addition, the consortium will participate in the Open Doors to Society initiative, in which society is invited for specific activities (organized at Maastricht University and other partner universities). External dissemination will target both the scientific community and the general public, including lay and patient associations, health care authorities and caregivers, regulatory authorities, scientific societies and professional boards, and the pharmaceutical industry. Apart from scientific publications in international peer-reviewed journals, reviews of the work will also be published in magazines directed toward a lay audience such as Scientific American and its national derivatives (e.g. Spektrum der Wissenschaft in Germany) and newsletters of national patients’ organizations. The essence of published papers will furthermore be discussed in local newspapers and university newspapers to show how the results of the research could be relevant for the general public.
To ensure proper management of these PPI actions there will be, as part of WP1, a dedicated person close to AD patients and caretakers to translate the scientific progress of the project into clear messages that can be easily understood by the public. In addition, at the start of the EPI-AD project, a Consumers Board (CB) will be installed. The CB will be asked to provide guidance on specific topics through all phases of the project. The CB will consist of clinicians, patients and caregivers. They will be asked to comment on study procedures, results and deliverables. Additionally, the PPI will be specifically evaluated by all the involved parties at the yearly project meetings.