The Sjögren Big Data Project.

 Big data is basically the collection of large amounts of information and in this case it is on patients with Sjogren's. This can help improve diagnosis and treatment. 

The Big Data Sjögren Project is an international, multicentre registry formed in 2014 to take a “high-definition” picture of the main features of primary SS at diagnosis by merging international SS databases.

The project is analysing the disease in patients from the 5 continents, including people of different ethnicities, something that had not been achieved previously. 

In addition to the evident breakthrough in the knowledge of the worldwide impact of the disease, the project has contributed to achieve other goals that are equally important for the scientific community devoted to the study of Sjögren. 

All this has been possible thanks to the creation of a multicentre registry that includes nearly 12,000 patients for a disease with a prevalence lower than 0.1%. The individual contribution of every participating centre, even those that included a modest number of cases, continues to increase progressively year by year, which reflects that participation in the project serves as an enhancer of the clinical experience and acknowledgement that each centre acquires at a regional/national level. And the almost 5 years of close collaboration has created a solid nucleus of clinical research, led by internists and rheumatologists, but also with the active participation of many other medical specialties, with more than 100 people currently involved, including the active participation in each centre of young researchers, who will be the future experts on SS. 

This is a group that has also achieved bidirectional communication between the data scientists (people who have the knowledge of maths and statistics and programming skills to conduct sophisticated and systematic analyses of data) and the clinicians, an essential feature to reach reliable clinical conclusions from Big Data studies. This close collaboration between researchers and data scientists is the key factor to achieve success in big data projects. 

SOURCE: PDF The Big Data Sjögren Consortium

OP0089 Big Data Sjögren Project (Eular-SS Task Force International Network): Characterization at Diagnosis of 5027 Patients with Primary Sjögren Syndrome

THU0352 Worldwide Heterogeneous Diagnostic Approach To Primary Sjögren Syndrome in 8315 Patients (EULAR-SS Task Force Big Data Sjögren Project)