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. 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.
Tools used in the module :
Brief Pain Inventory (coming soon in 10 languages)
Calculation of the TmP/GFR for the assessment of hypophosphatemia