The FD/MAS Patient Registry is an IRB-approved research study that that invites the patients and families to help answer some of the biggest questions about FD/MAS by completing questionnaires about their lives with FD or MAS. Have you enrolled in the FD/MAS Patient Registry yet? Are you up-to-date on your surveys? Take a trip to www.fdmasregistry.org today to learn more about the project, enroll, complete your surveys, or make sure you aren't due to provide more info! The FD/MAS Patient Registry: Your story powers research.
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Treatment satisfaction
Timeframe: Through study completion, an average of every 2 years
Perceived symptoms of pain
Timeframe: Through study completion, an average of every 2 years
Depression/anxiety
Timeframe: Through study completion, an average of every 2 years
Stigma
Timeframe: Through study completion, an average of every 2 years
Health-related Quality of Life
Timeframe: Through study completion, an average of every 2 years
Financial health
Timeframe: Through study completion, an average of every 2 years