Project goals

A core group of the European Reference Network on Rare Bone Diseases (ERN BOND) and Rare Endocrine Diseases (Endo-ERN) healthcare providers, patient representatives, affiliated centers and other experts have joined their forces and started EuRR-Bone in April 2020. This project will work closely with the European Registry for Rare Endocrine Conditions project (EuRRECa) to:

  • Develop an e-reporting programme (e-REC) that will capture new clinical encounters
  • Develop a centralised Core registry aligned with ERN BOND scope
  • Develop both clinician and patient facing platforms
  • Develop disease-specific modules on Achondroplasia, Fibrous Dysplasia/McCune Albright syndrome, Osteogenesis Imperfecta and Rare Hypophosphatemia
  • Explore linkages between EuRR-Bone and local, disease-specific registries