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NCT Number: NCT03231644

Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry

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.

Recruiting

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Key information

Conditions

Fibrous Dysplasia Bone Diseases Bone Diseases, Developmental Fibrous Dysplasia of Bone Fibrous Dysplasia, Polyostotic Mazabraud Syndrome McCune Albright Syndrome Musculoskeletal Diseases Osteochondrodysplasias

Sex eligibility

All sexes

Study type

Observational

Primary location

Tovah Burstein

Bethesda, Maryland, 20816-2558, United States

Location status: Recruiting

Location contact

Tovah Burstein, MFA

CONTACT

[email protected]

6033252489

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

  1. Treatment satisfaction

    Time frame: Through study completion, an average of every 2 years

    FACIT-Treatment Satisfaction scale

  2. Perceived symptoms of pain

    Time frame: Through study completion, an average of every 2 years

    Brief Pain Inventory

  3. Depression/anxiety

    Time frame: Through study completion, an average of every 2 years

    Hospital Anxiety Depression Scale

  4. Stigma

    Time frame: Through study completion, an average of every 2 years

    NeuroQol Pediatric and Adult Stigma short forms

  5. Health-related Quality of Life

    Time frame: Through study completion, an average of every 2 years

    SF-36,PedsQL 4.0

  6. Financial health

    Time frame: Through study completion, an average of every 2 years

    FACIT-Cost

Study contacts

Contact information is provided by the study sponsor or research team.

Carmel Shemmesh-Rafalowsky

CONTACT

[email protected]

Tovah Burstein

CONTACT

[email protected]

603-325-2489

Sponsors and collaborators

Lead sponsor

Tovah Burstein

Other

Registry information

Important dates

Study start
2016
Primary completion
2028
Study completion
2028
First posted
Jul 27, 2017
Registry last updated
Aug 12, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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