The FD/MAS Patient Registry is a research project that allows patients and families to share their experiences with fibrous dysplasia/McCune-Albright syndrome (FD/MAS) by completing a series of surveys.
The surveys were created in collaboration with patients, parents, clinicians and researchers, so that the data can be used to answer some of the most important questions about FD/MAS, including:
The FD/MAS Patient Registry is also an important way that people in the FD/MAS community can share their opinions on other important matters, including what kind of research is important to conduct in the future, and what kinds of support and services the Fibrous Dysplasia Foundation should provide.
Participation is free and convenient for people with FD/MAS and their legal guardians. You can join today at www.fdmasregistry.org.
Check out the slides or the video below to learn how to enroll in the registry, step by step.
If you’re located in the United Kingdom, please visit https://research.ndorms.ox.ac.uk/rudy/ to learn about the RUDY study, the FD/MAS registry based in the UK.