Are you a clinician taking care of adult patients with Osteogenesis Imperfecta?

Treatment initiation in adults with OI varies between centers and countries. A survey aimed at OI-professionals has been created to map current practice, identify unmet needs and support future consensus.

The survey is an initiative from the European Calcified Tissue Society (ECTS) Rare Bone Disease Action group (coordinated by Natasha Appelman-Dijkstra) in collaboration with the European Reference Network for Rare Bone Diseases (ERN BOND), the EuRREB – European Registries for Rare Endocrine and Bone conditions and European experts.

Quote professor Appelman-Dijkstra:
“Within this project, we are trying to explore what would be indications for adult physicians to initiate treatment in adult OI patients. We developed this survey in collaboration with several European OI experts from these networks or beyond, for instance professor Stuart Ralston. The purpose of the study is for the registries to identify items we might want to consider including in our data selection, which we are currently updating. For ERN-BOND, there is a work package dedicated to guidelines, so it might be that some of these outcomes can potentially form the basis for some sort of guideline on the treatment of adult OI.”

Deadline: June 15th, 2026