Article
Self-reported baseline phenotypes from the International Fibrodysplasia Ossificans Progressiva (FOP) Association Global Registry.
Bone - 1 May 2020
Pignolo Robert J, Cheung Kin, Kile Sammi, Fitzpatrick Mary Anne, De Cunto Carmen, Al Mukaddam Mona, Hsiao Edward C, Baujat Genevieve, Delai Patricia, Eekhoff Elisabeth M W, Di Rocco Maja, Grunwald Zvi, Haga Nobuhiko, Keen Richard, Levi Benjamin, Morhart Rolf, Scott Christiaan, Sherman Adam, Zhang Keqin, Kaplan Fredrick S
Abstract excerpt
A global, patient-reported registry has been established to characterize the course of disease and track clinical outcomes in patients with fibrodysplasia ossificans progressiva (FOP), an ultra-rare genetic condition of progressive heterotopic ossification (HO) that results in ankylosis of joints and renders most affected individuals immobile by the second decade of life. Here, we present baseline phenotypes on...
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