What is EuRR-Bone?
Expert centers for rare bone and mineral conditions and patient representatives have joined their forces and started the European Registry for Rare Bone and Mineral Conditions (EuRR-Bone) in April 2020. This project works closely with the European Registry 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
New Project: Patient reported outcome measures (PROMs) survey
The EuRR-Bone and EuRRECa registries are surveying patients and clinicians to better understand the needs of the bone and endocrine community regarding Patient Reported Outcome Measures (PROMs). PROMs are used in clinical practice to obtain reports from patients about their health and well-being.
The results of this survey will help the registries decide which generic PROMs to add to the registries clinician and patient platform.
We invite you to participate:
The European Registry for
Rare Bone and Mineral Conditions
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Next registry drop in Zoom session