hrp0097p1-415 | Bone, Growth Plate and Mineral Metabolism | ESPE2023

EuRR-Bone: Collecting Condition-Specific Outcomes on Fibrous Dysplasia/ McCune-Albright Syndrome

Luisa Priego Zurita Ana , O Bulaicon Oana , Arrieta Nerea , Bryce Jillian , Caballero Campos Magdalena , Chapurlat Roland , Doxiadis Gaby , Kassim Javaid M , Ovejero Crespo Diana , M de Rooij Tess , Seefried Lothar , Tessaris Daniele , Faisal Ahmed S , M Appelman-Dijkstra Natasha

Introduction: The European Registries for Rare Bone and Mineral Conditions (EuRR-Bone) were created in collaboration with the European Reference Network on Rare Bone Conditions (ERN-BOND). EuRR-Bone collects data using 2 platforms: e-REC, a tool that captures the occurrence of bone and mineral conditions, and the Core Registry which collects a set of Core Data Elements as well as longitudinal patient and clinician reported outcomes in condition specific module...