@ClementYChow Hi - why not brainstorm how to measure quality of life? https://t.co/JgDGdJRUtV - very relevant for #RareDisease with no cures and/or limited treatment. For many just getting an improved understanding or awareness might have a bigger impact t
In this #publication, experts on our patient-centered research team explored some of the challenges in health-related quality of life (HRQoL) assessment in rare disease, proposed solutions, and considered regulatory issues: https://t.co/MkkpX593Fu https://
Measuring health-related quality of life in patients with rare disease https://t.co/FBxWkcxH5D