Observational Study for Polyostotic Fibrous Dysplasia and McCune-Albright Syndrome
This is an observational study for people with Polyostotic Fibrous Dysplasia (PFD), a condition where normal bone is replaced by abnormal fibrous tissue, or McCune-Albright Syndrome (MAS), which includes PFD along with skin spots and early puberty. The study aims to understand how these conditions progress over time by collecting clinical information and studying tissue samples from participants. There are no specific interventions (treatments) being tested in this study. Anyone from 1 day to 100 years old with a likely diagnosis of PFD or MAS can potentially join. The goal is to define the natural history of the disease by gathering information until 2029.
- Study design
- This is an observational study with a planned enrollment of 500 participants. It is not testing a specific treatment.
- What's involved
- Not specified in the trial record.
- Compensation
- Not stated in the trial record.
- Follow-up
- Participants will be followed until 2029 to define the natural history of the disease.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
Screening and Natural History of Patients With Polyostotic Fibrous Dysplasia and the McCune-Albright Syndrome
At a glance
Conditions
Where it's being run
1 sites across 1 statesStudy leadership
- Alison M Boyce, M.D. · PRINCIPAL_INVESTIGATOR · National Institute of Dental and Craniofacial Research (NIDCR)
Who to contact
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What this trial measures
- Primary Objective: Define the natural history of disease by gaining clinical and basic information about PFD/MAS by following patients clinically and using in vitro experimentation with tissue from patients with the disease.2029
Successfully enroll, evaluate, and manage subjects with Polyostotic Fibrous Dysplasia and McCune-Albright Syndrome.