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Recruiting NCT03231644

NCT03231644 Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry

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Clinical Trial Summary
NCT ID NCT03231644
Status Recruiting
Phase
Sponsor Tovah Burstein
Condition Fibrous Dysplasia
Study Type OBSERVATIONAL
Enrollment 600 participants
Start Date 2016-10-31
Primary Completion 2028-10

Eligibility & Interventions

Sex All sexes
Min Age N/A
Max Age N/A
Study Type OBSERVATIONAL

Eligibility Fast-Check

Enter your details for a quick preliminary check. This does not replace medical advice.

What to Expect as a Participant

This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.

This trial targets 600 participants in total. It began in 2016-10-31 with a primary completion date of 2028-10.

⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.

Brief Summary

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.

Eligibility Criteria

Inclusion Criteria any one or more of the following: * clinical diagnosis of fibrous dysplasia * clinical diagnosis of McCune-Albright syndrome * clinical diagnosis of Mazabraud's syndrome

Contact & Investigator

Central Contact

Carmel Shemmesh-Rafalowsky

✉ PI.Registry@fibrousdysplasia.org

Frequently Asked Questions

Who can join the NCT03231644 clinical trial?

This trial is open to participants of all sexes, studying Fibrous Dysplasia. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.

Is NCT03231644 currently recruiting?

Yes, NCT03231644 is actively recruiting participants. Contact the research team at PI.Registry@fibrousdysplasia.org for enrollment information.

Where is the NCT03231644 trial being conducted?

This trial is being conducted at Bethesda, United States.

Who is sponsoring the NCT03231644 clinical trial?

NCT03231644 is sponsored by Tovah Burstein. The trial plans to enroll 600 participants.

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ClinicalMetric — Independent clinical trial intelligence platform. Not affiliated with NIH, ClinicalTrials.gov, the U.S. FDA, or any pharmaceutical company, hospital, or clinical research organization. Trial data is sourced from ClinicalTrials.gov for informational purposes only and does not constitute medical advice. Do not make any treatment, enrollment, or health decisions based solely on information found here — always consult a qualified healthcare professional. Full Disclaimer  ·  Last Reviewed: September 2026  ·  Data Methodology