EuRREB is proud to share the latest outcome of an international collaboration to improve research and care for patients with rare bone diseases. A new paper has been published describing the development of a core dataset for natural history studies in Fibrous Dysplasia/McCune-Albright Syndrome (FD/MAS).

This initiative brought together clinicians, researchers, and patient representatives from across Europe and beyond. The goal was to define a common set of clinical data items that should be collected in FD/MAS research, ensuring that future studies are more consistent, comparable, and patient-centered.

The publication is the result of a systematic Delphi process, including expert consensus and extensive stakeholder input. The resulting core dataset includes clinical, radiological, and patient-reported outcome measures, and is expected to guide both registry-based and clinical studies in FD/MAS.

You can read the full publication here: Developing a Standardised Dataset for Natural History Studies in FD/MAS

This milestone marks a key step forward in EuRREB’s mission to harmonise data collection across European rare bone registries.