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Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry

This is an observational study, called the FD/MAS Patient Registry, for people with Fibrous Dysplasia (FD), McCune-Albright Syndrome (MAS), or Mazabraud Syndrome. It aims to gather information about your experiences with these conditions by having you complete surveys. The study wants to understand how the diseases develop, how they affect your quality of life, how diagnoses are made, and what treatments and social services are most helpful. Researchers will look at your satisfaction with treatment, how much pain you experience, and any depression or anxiety you might have, with surveys completed about every two years. Anyone with a clinical diagnosis of one of these conditions can join.

Study design
This is an observational study, not testing any specific intervention, and aims to enroll 600 participants.
What's involved
You would complete surveys about your life with FD or MAS, with follow-up surveys approximately every two years.
Compensation
Not stated in the trial record.
Follow-up
You would be followed through study completion, with surveys approximately every two years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT03231644

Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry

Recruiting
Not specifiedAll AgesObservational
Tovah Burstein
~600 participants
Updated 2025-08-12 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Treatment satisfaction
Measured over Through study completion, an average of every 2 years
+5 more outcomes measured

Conditions

Fibrous Dysplasia
McCune Albright Syndrome
Mazabraud Syndrome

Explore related trials

Fibrous DysplasiaFibrous dysplasia of bone with intramuscular myxomaMcCune-Albright Syndrome

Where it's being run

1 sites across 1 states
Maryland1

Who to contact

Carmel Shemmesh-Rafalowsky
[email protected]
Email the study team

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Do you actually qualify for this trial?

Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.

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Eligibility criteria

Inclusion

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

What this trial measures

  • Treatment satisfactionThrough study completion, an average of every 2 years

    FACIT-Treatment Satisfaction scale

  • Perceived symptoms of painThrough study completion, an average of every 2 years

    Brief Pain Inventory

  • Depression/anxietyThrough study completion, an average of every 2 years

    Hospital Anxiety Depression Scale

  • StigmaThrough study completion, an average of every 2 years

    NeuroQol Pediatric and Adult Stigma short forms

  • Health-related Quality of LifeThrough study completion, an average of every 2 years

    SF-36,PedsQL 4.0

  • Financial healthThrough study completion, an average of every 2 years

    FACIT-Cost