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
Towards improving the quality of care, there is an increasing need to know what aspects and actions are important to you or to the person you care about regarding health and wellbeing. One of the ways to gain these insights is by using questionnaires called Patient reported outcome measures (PROMs). We would like to incorporate these general or generic PROMS into the registries created in the EURRECa and EuRR-Bone projects. However, before we do this, we need your help to understand what are the outcomes that are most important to you. To improve our understanding, we will perform two or more surveys of patients and health professionals who are part of the rare endocrine and bone conditions community. After each survey, we will provide you with the results so that you can see the level of agreement and we will continue with the surveys until we have a satisfactory level of agreement.
Therefore, at the end of the first survey, you will be asked to provide an email address to participate in the next stage of this exercise if desired.
This survey will take 5 to 10 minutes to complete and the link will be available soon at the EuRR-Bone website.
The European Registry for
Rare Bone and Mineral Conditions
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Next registry drop in Zoom session