The disease specific module was launched April 2022 and is the work of the vertical theme Fibrous Dysplasia/McCune Albright Syndrome (FDMAS)
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 FDMAS module appears automatically and is ready to use.
If you have questions or interest in joining the working group, please contact us on EuRR_Bone@lumc.nl
The full data dictionary can be downloaded here when available.
The modules should be updated every 12 months in adults and every 6 months in children when patients are under active control. If not updates should be provided every 3 years. Of course additional data can be entered on demand.
You only have to fill out the relevant modules to your patient eg when no Cranial Facial Fibrous Dysplasia or Endocrinopathies are present, the modules can be left empty.
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 :
Brief Pain Inventory (coming soon in 10 languages) in adults and children
Calculation of the TmP/GFR for the assessment of hypophosphatemia
Eurr-Bone 