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Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry

StatusRecruiting
PhaseNot specified
Started
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Record History

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  1. Primary and study completion dates: Oct 2026 to Oct 2028
    • Site contact updated
    v6
  2. Study site revisedv5
  3. Re-verified, no change to tracked fieldsv4
  4. Lead sponsor: Deanna Portero to Tovah Bursteinv3
  5. Primary endpoints revised (6)v2
  6. Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
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.
Trial Details
NCT Number NCT03231644
Lead Sponsor Tovah Burstein
Conditions
(from sponsor)		 Fibrous Dysplasia, McCune Albright Syndrome, Mazabraud Syndrome
Related terms Fibrous Dysplasia of Bone, Fibrous Dysplasia, Polyostotic
Enrollment 600 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov