Osteogenesis Imperfecta (OI)
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 and on 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 firstname.lastname@example.org.
The full data dictionary can be downloaded here.
The module collects the information on
- Fractures and bone mineral density;
- Genetic findings;
- Clinical features (including the assessment of scoliosis, mobility and lung function);
- Medical and surgical treatment.
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 EQ-5D 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.