USE OF AIDS, ASSISTIVE DEVICES AND ADAPTATIONS BY INDIVIDUALS WITH FIBRODYSPLASIA OSSIFICANS PROGRESSIVA (FOP): 36-MONTH RESULTS FROM A GLOBAL NATURAL HISTORY STUDY

Fibrodysplasia ossificans progressiva (FOP) is an ultra-rare genetic disorder of progressive heterotopic ossification, causing cumulative disability. Most individuals with FOP become immobilized by the third decade of life, requiring lifelong assistance with activities of daily living. Here, we characterize the use of aids, assistive devices and adaptations (AADAs) as a surrogate measure of FOP progression in individuals with FOP enrolled in a 36-month, global natural history study (NHS; NCT02322255).