If you have a rare bone or endocrine condition, or are a physician who follows people with these conditions, take the EuRR-Bone PROMs survey and give your opinion on what are the most important questions to ask about daily experiences and health needs.
The European Registry for Rare Bone and Mineral Conditions (EuRR-Bone) was created by Experts on rare bone and mineral conditions and patient representatives in 2020. This project works closely with the European Registry for Rare Endocrine Conditions (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.
EuRR-Bone and EuRRECa 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 survey is available until January 31 and results will help decide which generic PROMs to add to the clinician and patient registry platform.
Choose what suits you and Take the EuRR-Bone PROMs survey
Visit the European Rare Bone Forum (ERBF) for more news and information on Rare Bone Conditions here