Recruiting

Observational Study

Sponsor:

Tovah Burstein

Code:

NCT03231644

Conditions

Fibrous Dysplasia

McCune Albright Syndrome

Mazabraud Syndrome

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

Study Details

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.

Conditions

Fibrous Dysplasia

McCune Albright Syndrome

Mazabraud Syndrome

Study ID

NCT03231644

Start date

Oct 31, 2016

Status verified date

Aug, 2025

Completion date

Oct, 2028

Anticipated

Primary completion date

Oct, 2028

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

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

Study Design

Enrollment

600 participants

Anticipated

Interventions and Outcome Measures

Arms

FD/MAS Patients

Patients with fibrous dysplasia and/or McCune-Albright syndrome and related disorders.

Primary outcome measure

  • Treatment satisfaction [ Time Frame: Through study completion, an average of every 2 years ]
  • Perceived symptoms of pain [ Time Frame: Through study completion, an average of every 2 years ]
  • Depression/anxiety [ Time Frame: Through study completion, an average of every 2 years ]
  • Stigma [ Time Frame: Through study completion, an average of every 2 years ]
  • Health-related Quality of Life [ Time Frame: Through study completion, an average of every 2 years ]
  • Financial health [ Time Frame: Through study completion, an average of every 2 years ]

Central Contacts and Locations

Central contacts

Carmel Shemmesh-Rafalowsky

PI.Registry@fibrousdysplasia.org

Tovah Burstein

603-325-2489TBurstein@fibrousdysplasia.org

Locations

Tovah Burstein

Recruiting

Bethesda, Maryland, United States, 20816-2558

Contacts

Tovah Burstein, MFA

6033252489info@fibrousdysplasia.org

More Information

Sponsor

Tovah Burstein

Last update posted

Aug 12, 2025

Last verified

Aug, 2025

Keywords

  • Fibrous Dysplasia
  • McCune-Albright Syndrome
  • Mazabrauds
  • FD/MAS

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-10. This information was provided to ClinicalTrials.gov by Tovah Burstein on 2025-08-12.