In accordance with the scientific priorities set by our Board, a first project has been designed to improve our knowledge on two major issues: prevention and caregiver support.
A cohort is an essential tool to study a population in the long run. It consists of a large group of individuals that are being followed for a long period of time to examine how their health condition evolve over the years and to correlate these evolutions with parameters measured along the study.
A cohort can gather either a group of patients (in order to measure the impact of different factors on the course of their disease) or healthy individuals (the cohort will then be used to identify factors that can favor certain health problems).
A cohort is the best tool to study environmental factors (such as air pollutants or work conditions), biological factors (among which genetic predispositions) or behavioural factors (nutrition, physical activity, smoking, etc.) and their influence on specific diseases.
The cohort set up by the endowment fund France Alzheimer is unique because it will follow at the same time people living with Alzheimer’s disease and their relatives: their caregivers and their family circles (children and/or siblings). The cohort will then put together a community dedicated to research, each member providing information throughout the course of the study to help researchers to improve our knowledge on the disease and to improve prevention.
The ALFA cohort will allow several research projects to be launched: they will be focused on pointing out predictive factors of an early alteration of cognitive capacities and identifying new biomarkers detected in the blood that can either improve the diagnosis of the disease or help to develop risk prediction models.
Every participant will have access to an online platform. This website will broadcast information about the disease, tips and best practices. The platform will be investigated by researchers to study the emerging dynamics among the community. It will also be used to give questionnaires throughout the study to better apprehend their lifestyle, their socio-economic status, how the disease is affecting their daily life, etc.
To be useful, a cohort has to be robust: it has to gather a large number of participants (in order to have a sufficient “statistical power” to measure subtle effects) and to last many years (some factors can have an influence several years after the first exposure). It is thus paramount to design a pilot study to evaluate the feasibility of the cohort and to make sure its future extension is achievable. The pilot study will be launched by three Resources and Research Memory Centers in Toulouse, Rouen and Montpellier. Toulouse Hospital will promote the study, however, the endowment fund will share the licence on all the data gathered during the study.
The goal of this pilot study is to include 150 clusters, each composed of one person living with the disease, one caregiver and/or at least one relative, representing about 450 participants, over a period of 18 months.
Each participant will be followed for 24 months. During this time, several visits are planned in each center for all participants. Blood samples will be taken to build up a biobank, later available for new research projects.
Participants will also be asked to answer a series of questionnaires on the online platform on their lifestyle, where they will also have the opportunity to chat with other members of the community on a forum.
The pilot study will study the feasibility of the cohort and help us improve its design if we identify necessary corrections. During this study will be evaluated the recruitment (how many people agree to participate, how many relatives in every cluster, etc.), the acceptance of blood samples, the use of the online platform, the cohort attrition, etc.