Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry

NCT ID: NCT03231644

Last Updated: 2025-08-12

Basic Information

• Recruitment Status: RECRUITING
• Total Enrollment: 600 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2016-10-31
• Study Completion Date: 2028-10-31

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.

Detailed Description

The FD/MAS Patient Registry is an IRB approved research project that allows patients and families to share their experiences with fibrous dysplasia/McCune-Albright syndrome (FD/MAS) by completing a series of surveys.

The surveys were created in collaboration with patients, parents, clinicians and researchers, so that the data can be used to answer some of the most important questions about FD/MAS, including:

the way the disease develops over time (its "natural history"), the patient experience of the disease, and its impact on quality of life, how and when diagnoses are made, the scope of treatments in use, what surgical techniques work best, and for whom, what other medical interventions work best, and for whom, what social services and therapies are useful, the costs of care to patients and their families, issues that concern patients (such as the impact of pregnancy on FD, or children feeling different and facing stigma), and which research questions and support programs you think are important to fund.

Participation is free and convenient for people with FD/MAS and their legal guardians. You can join today at www.fdmasregistry.org.

Conditions

Fibrous Dysplasia; McCune Albright Syndrome; Mazabraud Syndrome

Study Design

• Observational Model Type: COHORT
• Study Time Perspective: CROSS_SECTIONAL

Study Groups

FD/MAS Patients

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

No interventions assigned to this group

Eligibility Criteria

Inclusion Criteria

• clinical diagnosis of fibrous dysplasia
• clinical diagnosis of McCune-Albright syndrome
• clinical diagnosis of Mazabraud's syndrome

• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

Tovah Burstein

OTHER

Sponsor Role: lead

Responsible Party

Tovah Burstein

Community Engagement Director

Responsibility Role: SPONSOR_INVESTIGATOR

Locations

Tovah Burstein

Bethesda, Maryland, United States

Site Status: RECRUITING

Countries

United States

Central Contacts

Carmel Shemmesh-Rafalowsky

Role: CONTACT

PI.Registry@fibrousdysplasia.org

Tovah Burstein

Role: CONTACT

TBurstein@fibrousdysplasia.org

603-325-2489

Facility Contacts

Tovah Burstein, MFA

Role: primary

info@fibrousdysplasia.org

6033252489

Other Identifiers

Pro00018980.

Identifier Type: -

Identifier Source: org_study_id