The Condition Specific Modules will collect a more detailed dataset on specific rare conditions. In the first development phase of EuRR-Bone, 4 diseases were selected to develop these specific modules (Fibrous Dysplasia and McCune Albright syndrome, Achondroplasia, Osteogenesis Imperfecta and Rare causes of Hypophosphatemia). At the moment, all listed modules are active in Core Registry platform:
- Fibrous Dysplasia and McCune Albright syndrome
- Rare Hypophosphataemia
- Osteogenesis Imperfecta
- Parathyroid Carcinoma
All modules are designed by our condition specific working groups which include patient-representatives as well as ERN HCPs and affiliated experts.