Fibrous Dysplasia / McCune Albright Syndrome (FD/MAS)

Fibrous Dysplasia / McCune Albright Syndrome (FD/MAS)

The condition specific module was launched in April 2022 and is the work of the Fibrous Dysplasia / McCune Albright Syndrome (FD/MAS) Working Group.

Want to start using the module? Get access to the Core Registry and read the instructions (, 991 KB) on 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 registries@lumc.nl.

The full data dictionary can be downloaded here.

The module collects the information on

  • Anthropometry;
  • Clinical features (including condition components, treatment history, pregnancy information);
  • Condition characteristics (musculoskeletal findings, endocrinopathies, bone and mineral metabolism data);
  • Separate tabs for cranio-facial FD and McCune Albright Syndrome;
  • Medical and surgical treatment.

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 (e.g., 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