Osteogenesis Imperfecta

The condition specific module was launched in July 2022 and is the work of the Osteogenesis Imperfecta (OI) Study Group.

Want to start using the module? Get access to the Core registry here and read the instructions about how to use the module. After entering the patient in the Core Registry, the OI module appears automatically and is ready to use.

If you have questions or interest in joining the working group, please contact us on registries@lumc.nl.

The full data dictionary can be downloaded here.

The modules should be updated every 12 months when patients are under active control. If not updates should be provided every 3 years. Of course additional data can be entered on demand.

Do not forget for all bone conditions EQ5D and mobility should be assessed (either by clinician or patient with access) yearly. You will need to set those within the general bone dysplasia module

Tools used in the module:

This page has last been updated in May 2023, for the most up-to-date information on our Osteogenesis Imperfecta Module, please visit our new website.