An Open Science Data Challenge to Address Rare Neurodevelopment Diseases

This spring, RARE-X will kick off Xcelerate RARE: A Rare Disease Open Science Data Challenge. For this inaugural challenge, researchers and data scientists will work in collaborative and competitive environment to use patient-provided data to solve research questions focused on rare pediatric neurodevelopmental diseases. More than 44 rare disease communities represented by more than 70 patient advocacy groups are participating in the challenge and patients and their families affected by these conditions are actively loading their health data to the RARE-X data platform to enable researchers to make discoveries. We spoke about the open science data challenge with senior director of scientific programs for RARE-X Karmen Trzupek, chief scientific officer of the children’s tumor foundation Salvatore La Rosa, and section head of medical informatics for Genentech Andrew Nguyen. The three discussed open science challenges, how they work, and what RARE-X hopes to accomplish through this event.