In the context of World Alzheimer's Day (21 September), scientists from six Belgian universities and university hospitals are developing a digital platform for the secure exchange of patient data and expertise. The research and development project, called Translate-AD, will run for three years. The aim is to share data faster and more securely in order to better understand Alzheimer's disease and to be able to diagnose and treat the disease earlier and better in the future.
In Belgium, Alzheimer's is the number one cause of death. Although a lot of research is being done into the origin and treatment of Alzheimer's, many questions about the origin of the disease remain unanswered. This is partly because the exchange of patient data in order to join forces in scientific research is hampered by privacy legislation.
Translate-AD project
The Translate-AD project of six universities and university hospitals - Vrije Universiteit Brussel (VUB), UZ Brussel, Université Libre de Bruxelles (ULB), Hôpital Erasme, Université Catholique de Louvain (UCL) and Cliniques Universitaires St Luc - must tackle and solve this challenge. Within the project, researchers and scientists are working on a digital ecosystem that facilitates the exchange of expertise and patient data from the various university hospitals.
“Our three Brussels memory clinics are all recognised by the European Alzheimer Disease Consortium (EADC) as European reference centres for scientific research, diagnosis and treatment of Alzheimer's disease. We already enjoy working together in the field of Alzheimer's research because the three institutions have very complementary and unique research expertise in-house. This project will enable us to exchange information and our complementary expertise more quickly and effectively, allowing us to develop a joint research cohort that will be unique due to the combination of research data,” says VUB professor dr. Sebastiaan Engelborghs, coordinator of the research and also head of the Neurology department at the UZ Brussel.
Solving complex issues
The digital platform enables researchers to solve the most complex research issues together, without having to exchange patient data. A research question is converted into a script that is then sent from a central computer, specifically for research, to the local hospital servers. All data analyses are performed on these local servers where the anonymised patient data is located. Afterwards, the results of the data analyses are sent from the local server to the central research computer. In this way, research collaboration becomes a lot easier with full respect for privacy regulations.
“The platform is also important because more and more medicines are coming on the market that slow down Alzheimer's disease. With the digital centralisation of the biomarkers, we can see at an early stage which patient benefits from a certain type of medicine,” says VUB researcher dr. ir. Jorne Laton, operational coordinator of the project.
Data security guaranteed
The researchers emphasize that the patients' data is always well protected. They use AI techniques to secure data, among other things. This ensures that only authorized researchers have access to the information. In addition, they organize regular meetings for patients who participate in the study. At these meetings, the scientists talk about the results and progress of the study, so that the patients remain informed about their data use.
We are also familiar with this approach to sharing and researching privacy-sensitive data from the Personal Health Train. This is also an innovative way of data analysis, suitable for studies that use privacy-sensitive data from multiple data sources. Where normally all data must be collected from different sources, PHT brings the analysis to the different data sources, like a train takes its passengers to different stations.
International ambitions
The scientists are initially developing the platform specifically for Alzheimer patients in Brussels. However, in the long term there are also plans to expand to other Belgian and international centers. In this way, a platform is also created that can be used for research into other (rare) diseases and collaborations across national borders.
