Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry

Conditions

• Fibrous Dysplasia
• Mazabraud Syndrome
• McCune Albright Syndrome

Eligibility Criteria

Sex

ALL

Age

N/A - N/A

Healthy Volunteers

Not accepted

Study Details

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.

Key Dates

Start date

Oct 31, 2016

Status verified

Aug 2025

Primary completion

Oct 31, 2028

Completion

Oct 31, 2028

Study Design

Enrollment

600 participants (estimated)

Arms

• Arm: 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 ]

Central Contacts

• Carmel Shemmesh-Rafalowsky
  [email protected]
• Tovah Burstein
  603-325-2489
  [email protected]

Locations (1)

Find similar trials in Bethesda, MD