Attending ECRD?
Check our poster: presented by Ines Alves EuRR-Bone WP 5 chair and e-PAG of ERN BOND
EuRR-Bone @ICCBH 2022:
2nd ICCBH-ERN BOND Workshop on Spinal complications in Achondroplasia, full program here
P158
The European Registries for Rare Bone and Mineral Conditions (EuRR-Bone): Focusing on the Core
Registry and Disease Specific Modules
Presenter: Diana-Alexandra Ertl (Paris, France)
The European Registries for
Rare Bone and Mineral Conditions
What is EuRR-Bone?
Expert centers for rare bone and mineral conditions and patient representatives have joined their forces and started the European Registries for Rare Bone and Mineral Conditions (EuRR-Bone) in April 2020. This project works closely with the European Registries for Rare Endocrine Conditions project (EURRECa) and the European Reference Networks for Rare Bone and Rare Endocrine conditions and includes:
- An e-reporting program (e-REC) that captures new clinical encounters
- A centralised Core registry
- Disease-specific modules on Achondroplasia, Fibrous Dysplasia/McCune Albright syndrome, Osteogenesis Imperfecta and Rare Hypophosphatemia
days
hours minutes seconds
until
Next registry drop in Zoom session
Go to our news page for more information or join here
Eurr-Bone 