The European Registry for Rare Bone and Mineral Conditions (EuRR-Bone) needs input from people with OI and other rare bone conditions to finalize their questionnaires directed towards patients. What are the most relevant aspects for people with OI? Which topics can be disregarded?

There is also a separate survey asking for input from professionals who are working with the same target group.

Help them create a registry which is relevant for most of us by using 10 minutes to answer some questions:

Patient survey: www.ec.europa.eu/eusurvey/runner/DelphiPROMsEuRRECaEuRRBonePatients

Health care provider survey: www.ec.europa.eu/eusurvey/runner/DelphiPROMsEuRRECaEuRRBoneclinicians

Deadline to answer has been prolonged to February 21st 2022.