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:

Patient survey

Clinician survey  

The European Registry for

Rare Bone and Mineral Conditions

1643202000

  days

  hours  minutes  seconds

until

Next registry drop in Zoom session

Go to our news page for more information or join here