Actively Recruiting
Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry
Led by Tovah Burstein · Updated on 2025-08-12
600
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
This research study invites patients and families affected by fibrous dysplasia, McCune-Albright syndrome, and Mazabraud syndrome to share their experiences through a series of questionnaires. The study aims to answer key questions about how these conditions develop over time, patient experiences, diagnosis timing, treatment options, surgical techniques, social services, and the impact on quality of life and financial health. The project is led by Tovah Burstein and approved by an institutional review board to ensure ethical standards. Participants complete surveys designed with input from patients, parents, clinicians, and researchers. These surveys gather information on disease progression, symptoms like pain, mental health aspects such as depression and anxiety, stigma, treatment satisfaction, and the costs related to care. The study is observational, with no experimental treatments, and participation is free and fully remote, allowing people anywhere to contribute at their convenience. Participants provide information through surveys approximately every two years throughout the study duration. The research team monitors various outcomes including treatment satisfaction, pain, mental health, stigma, quality of life, and financial health. The study continues until 2028, with ongoing data collection to improve understanding of these rare conditions and help guide future research and support programs.
CONDITIONS
Brief Title
Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Clinical diagnosis of fibrous dysplasia
- Clinical diagnosis of McCune-Albright syndrome
- Clinical diagnosis of Mazabraud's syndrome
You will not qualify if you...
History of severe allergic reactions to study medication Currently pregnant or breastfeeding Recent participation in another clinical trial within the last 30 days Presence of uncontrolled medical conditions that could affect safety
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
Duration - Through study completion, up to approximately 6 years
Participants complete a series of surveys to share their experiences with fibrous dysplasia/McCune-Albright syndrome. Surveys assess symptoms, quality of life, treatment satisfaction, and other health-related aspects.
Surveys completed approximately every 2 years
Trial Site Locations
Total: 1 location
1
Tovah Burstein
Bethesda, Maryland, United States, 20816-2558
Actively Recruiting
Research Team
C
Carmel Shemmesh-Rafalowsky
T
Tovah Burstein
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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