[Note: This article was published in the 6th issue of the the Pasqual Maragall Foundation magazine]
The COVID-19 pandemic halted the visits of participants in the Alzheimer’s prevention studies we have underway at our research center, the Barcelonaβeta Brain Research Center (BBRC), for three months. However, our scientific activity did not stop, as researchers had data to analyze and new systems to collect, thanks to the huge work of digitization in which we are immersed.
Just to give you an idea of the amount of data we process, we currently have about a dozen research studies underway that generate, for example, more than 10,000 variables. That is, information about the sex and age of the participant, their weight, if they smoke, the exercise they do, the hours of sleep, the food they eat, etc. To this figure are added the more than 180,000 genetic variants related to neurodegenerative diseases that we obtain in whole genome association studies; the nearly 18,000 neuroimaging records we generate with information about the structure and functionality of the brain, and all the information from the variables obtained after analyzing the biomarkers of the more than 50,000 biological samples we have stored. All in all, an avalanche of data is growing exponentially each year and may be key to help find ways to prevent Alzheimer’s.
At the BBRC the digitization project is led by the members of the Data Center, a leading multidisciplinary unit made up of experts in data analysis and management, neuroimaging and programming. "Our mission is to put the data at the service of researchers in the shortest possible time, guaranteeing the highest standards of quality and traceability" says David Fusté, head of the Data Center and director of Systems and Organization of the Pasqual Maragall Foundation.
The data collection and management system they are using and developing follows very strict rules, similar to those used in clinical trials. This is explained by Dr. Karine Fauria, BBRC Scientific Manager: “Our cohort contains data of exceptional quality that guarantees the integrity of scientific research. This makes our research easily replicable and shared around the world".
In this sense, the data collected in our studies follow the four golden rules of the FAIR principles, established in 2016 by an international consortium of scientists: that they can be easily found automatically (Findable); that are accessible after going through an authentication and authorization process (Accessible); that can coexist with other data analyses, storage and processing systems and applications (Interoperable), and that can be reused for other studies (Reusable).
Sharing to move forward
Over the past decade, the scientific community has accelerated the implementation of hundreds of initiatives related to the storage and management of massive research data. The director of the BBRC and the Pasqual Maragall Foundation, Dr. Arcadi Navarro, knows first hand the benefits of this type of project, as he directs from Barcelona one of these initiatives: the European Genome-Phenome Archive (EGA), a huge European database that contains results of scientific studies with genetic and phenotypic information of thousands of people. “Data sharing is crucial to accelerate research around the world. To do more science, and to do it better, we need to realize that research is not a project of a center, a city or a country: it is a global project of all humanity. Sharing is essential to move forward” says Dr. Navarro.
Each research field has its reference repositories. In the case of Alzheimer’s disease, one of the most prominent is the Global Alzheimer’s Association Interactive Network (GAAIN), promoted by the american Alzheimer’s Association. It is an online research platform, designed to connect scientists, and share sophisticated data and analysis tools. On this platform, the variables of about half a million people around the world are available.
Among the data published in the GAAIN, there are hundreds of variables from the participants in our Alfa + study, created at the BBRC with the support of “la Caixa” Foundation, and the international neuroimaging platform TRIBEKA, co-led by the director of the Alzheimer's Prevention Program at the BBRC, Dr. José Luis Molinuevo, together with researchers from the University of Edinburgh. This data is always provided to ensure the anonymity of participants, and can be used by scientists around the world who request it to carry out research projects.
The amount of data we generate, process and share at the BBRC is growing day by day, thanks to the continued support of the participants in our research projects, and the work of researchers and members of the Data Center. The digitization process in which we are immersed allows us to accelerate the advancement of Alzheimer's disease research in a sustainable and joint way, and is also possible thanks to the sustained support of partners, patrons and donors who maintain this indispensable and at the same time expensive infrastructure at the service of science.