AI4Gov was presented by our JSI colleagues, Tanja Zdolšek Draksler and Alenka Guček, at the 12th European Conference on Rare Diseases and Orphan Products, one of the biggest, patient-led, rare disease policy-shaping events held in Europe, with over 1,000 participants this year.
JSI’s e-poster “Bridging Global Disparities: An Analytics Pipeline for Detecting Bias and Incompleteness in Rare Diseases Datasets” deals with bias in rare disease data repositories, where the developed pipeline is not only capable to enhance data reliability but also sheds light on the unique challenges faced by underrepresented groups and regions. By quantifying and addressing the imbalances in data, this research aims to facilitate a more inclusive and equitable approach to rare disease research, ultimately leading to more effective interventions and improved outcomes on a global scale.
