This condition specific module is a joint project of the Rare Bone Disease action group of the European Calcified Tissue Society (ECTS), the European Reference Network for Rare Bone Disorders (ERN BOND) and the European Registries for Rare Bone and Mineral Conditions (EuRR-Bone). Melorheostosis module was launched in January 2023 and is the work of the Melorheostosis Study Group.
According to the ORPHAnet coding Melorheostosis falls under primary bone dysplasia with increased bone density (ORPHA93444) and to avoid large dropdown lists, the first registration within the Core registry is under this orphacode, after this the more detailed code can be chosen: Melorheostosis (ORPHA2485), Melorheostosis with osteopoikilosis (ORPHA1879), Buschke-Ollendorff syndrome (ORPHA1306) or Isolated osteopoikilosis (ORPHA166119). After entering the detailed diagnosis the Melorheostosis module appears automatically and is ready to use.
Want to start using the module? Get access to the Core registry here and read the instructions about how to use the module.
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 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. The Module requests a small amount of clinical data, information on pain (using BPI) and QoL (using MSK-HQ) these are available in different languages for the patient and for the clinician if needed as well. Next to the disease specific outcomes we collect EQ5D and mobility information on all patients with bone and mineral conditions, so please fill these out as well (or ask the patient to fill them out if they would like to participate).
PROMS can be requested automatically to the patient by the system and the clinician receives information when filled in.
Tools used in the module:
- MSK-HQ – is a short questionnaire that allows people with musculoskeletal conditions to report their symptoms and quality of life in a standardized way
- Brief Pain Inventory
This page has last been updated in May 2023, for the most up-to-date information on our Melorheostosis Module, please visit our new website.