Introduction to Odyssey: real-world rare disease data collection program for patients with long-chain fatty acid oxidation disorders in the US

The long-chain fatty acid oxidation (LC-FAOD) Odyssey study, conducted with PicnicHealth, uses a novel patient (pt)-centered design to collect prospective and retrospective data on the real-world impact of LC-FAOD, and prospective data of pt- and caregiver-reported outcomes (PROs). The goal is to fill the current data gap in real-world LC-FAOD management and outcomes, and ultimately identify areas in which to improve care.