Breakout Session

NDDs in Rare Diseases: A Symptom-Based Cross-Disease Analysis Using RARE-X Data

11-11:50 a.m. BEST 125

Presented by: Zohreh Talebizadeh, PhD, Global Genes, Senior Director, RARE-X Research Program

As the research arm of Global Genes, RARE-X has developed an innovative, scalable platform for collecting symptom and patient-reported outcome (PROs) data using a disease-agnostic approach. Unlike traditional rare disease studies that focus on single conditions, RARE-X captures both shared and unique symptoms across diseases, enabling broader insights and cross-condition comparisons.  

In collaboration with 120+ patient advocacy groups, RARE-X represents over 75 rare disorders globally, with more than half classified as neurodevelopmental disorders (NDDs). Traditional research efforts often limit data sharing and lack longitudinal data. RARE-X addresses these challenges by providing a data-driven platform that supports comprehensive, cross-disease data collection.  

This presentation will highlight how RARE-X data can be leveraged to study NDDs across rare diseases, offering unique insights into symptom trajectories, cross-disease comparisons, and broader research applications. We will also discuss how AI-based technology can enhance analytics for PROs data, uncover deeper insights, and identify key patterns, driving meaningful advancements in biomedical research.