Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry

Study Overview
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Brief Summary
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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
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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.

Official Title
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Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry

Conditions
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Fibrous Dysplasia, McCune Albright Syndrome, Mazabraud Syndrome

Participation Criteria
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Eligibility Criteria
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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
Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| FD/MAS Patients<br>Patients with fibrous dysplasia and/or McCune-Albright syndrome and related disorders. | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Treatment satisfaction | FACIT-Treatment Satisfaction scale | Through study completion, an average of every 2 years | 
| Perceived symptoms of pain | Brief Pain Inventory | Through study completion, an average of every 2 years | 
| Depression/anxiety | Hospital Anxiety Depression Scale | Through study completion, an average of every 2 years | 
| Stigma | NeuroQol Pediatric and Adult Stigma short forms | Through study completion, an average of every 2 years | 
| Health-related Quality of Life | SF-36,PedsQL 4.0 | Through study completion, an average of every 2 years | 
| Financial health | FACIT-Cost | Through study completion, an average of every 2 years | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Fibrous Dysplasia, Mazabrauds, FD/MAS, McCune-Albright Syndrome