Share4Rare Team

Share4Rare Webinar VI: "How your data is processed in Share4Rare"

Bright beams of light
Share4Rare has unique feature regarding patient data management. The project collects data donated by patients and stores it safely in compliance of the strict European privacy regulation. Still, generating knowledge in rare diseases implies data sharing, not only data collection. Share4Rare shares data between patients without explicit data exchange, but working with the underlying patient similarity from provided data.

What we will talk about in this webinar

Alex Perera, from the Polytechnic University of Catalonia, will explain how Share4Rare follows the European privacy regulation for the collection, usage and storage of clinical data in the Share4Rare platform. He will introduce the Human Phenotype Ontology and why this is relevant to the project and the rare disease community. He will then explain how this data is mathematically managed (without maths!) and reverted into the Share4Rare system for fostering knowledge creation and exchange. Finally, the sections of People Like Me and Questions & Answers systems will be explained.

What you will take home

After this webinar, participants will have a deeper understanding of how patient data is managed in the Share4Rare platform, and how this data is used in the People Like Me and Questions & Answers system, and how this approach will provide better  insights and advance rare disease research.

The webinar will take place on Tuesday May 28th at 6:00 pm CET. For registrations please click here.


Alexandre Perera Lluna (1973) holds a PhD in Physical Sciences (2003 UB) and he is teaching in the Polytechnic University of Catalonia (2013). He is currently the coordinator of the research group B2Slab, Bioinformatics and Biomedical Signals Laboratory.