946831 - EuRR-Bone - HP-PJ-2019,EUROPEAN COMMISSION Consumers, Health, Agriculture and Food Executive Agency (CHAFEA)

European Registry For Rare Bone and Mineral Conditions; This project will:
• Establish a centralised registry for all rare bone and mineral disorders, covering a core data set, building upon the set already established by and in collaboration with EuRRECa.
• Establish four disease-specific modules (Disease Specific Modules) on FD/MAS, OI, Rare Hypophosphatemia and Achondroplasia that capture more detailed genetic, clinical and patient related outcome measures in such a way that the approach is scalable to other rare bone and calcium disorders.