FD/MAS Patient Registry is Open for Enrollment
It’s hard for families, doctors and researchers to find answers to basic questions about how to treat fibrous dysplasia/McCune-Albright syndrome (FD/MAS), because FD/MAS is so rare and because there is not enough patient data for researchers to analyze. The FD/MAS Patient Registry is a research project that allows patients and families to share their experiences with FD/MAS by completing a series of surveys.
If enough people in the FD/MAS community tell their story through the FD/MAS Patient Registry, then as a community, we could get more answers about FD/MAS symptoms, treatments, and outcomes. We could find out which problems are uncommon, and which obstacles are likely. We could learn which paths work, and which paths are dead ends.
If you are a person living with FD/MAS, or are the legal guardian of a person living with FD/MAS, you can enroll is this study. For more information about the study or how to enroll, please visit the About page for patients.
This news section will be updated from time to time with updates about the research project, including news about findings from the study.