Understanding the natural history of Polyostotic Fibrous Dysplasia and McCune-Albright Syndrome
Official title: Screening and Natural History of Patients With Polyostotic Fibrous Dysplasia and the McCune-Albright Syndrome
Run by National Institutes of Health Clinical Center (CC) · NCT00001727 · Data updated 2026-11-12
This study is trying to learn more about how Polyostotic Fibrous Dysplasia and McCune-Albright Syndrome affect patients over time by collecting data and samples from them.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 1 Day to 100 Years |
| Sex | All |
| Enrollment | 500 (estimated) |
| Sponsor | National Institutes of Health Clinical Center (CC) NIH |
| Locations | 1 site (Bethesda, Maryland) |
| Status | Recruiting |
| Started | December 13, 1998 |
| Registry record updated | November 9, 2026 |
| Trial ID | NCT00001727 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study include individuals of any age who are suspected to have PFD or MAS based on clinical evaluation.
✕Probably not a fit
Patients who are unwilling to cooperate with evaluations or cannot provide informed consent may not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This observational study aims to collect data and biological samples from patients diagnosed with Polyostotic Fibrous Dysplasia (PFD) and McCune-Albright Syndrome (MAS). It seeks to define the natural history of these conditions by following patients over time and conducting in vitro experiments with their samples. The study will help to better understand the progression and impact of these disorders, which are characterized by disfiguring and painful bone lesions. Currently, there are no clearly defined systemic therapies for these conditions, making this research particularly important.
Why it matters
Potential benefit: If successful, this study could provide valuable insights into the natural progression of PFD and MAS, potentially leading to improved management strategies for affected patients.
How similar studies have gone: While there is limited research on the natural history of these conditions, this study represents a novel approach to understanding PFD and MAS.
Who can join: the full rules
Show full inclusion / exclusion criteria
* INCLUSION CRITERIA 1. Any patient, age 1 day of life and older, with a likelihood of having PFD or MAS, based on information from an appropriate referring physician or surgeon or provided by the patient or guardian. The diagnosis will be based on typical findings on bone biopsy or on clinical grounds. EXCLUSION CRITERIA 1. Patient, child, or parent/guardian unwilling to fully cooperate with the evaluations. 2. Patient or parent/guardian unable to provide informed consent.
Where it's running
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National Institutes of Health Clinical Center
Bethesda, Maryland, United States Recruiting
Study contacts
- Principal investigator: Alison M Boyce, M.D. — National Institute of Dental and Craniofacial Research (NIDCR)
- Study coordinator: Olivia J de Jong, C.R.N.P.
- Email: olivia.dejong@nih.gov
- Phone: (240) 595-2764
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Using Denosumab to treat Fibrous Dysplasia and McCune-Albright Syndrome in adults
This study is testing if Denosumab can help adults with Fibrous Dysplasia and McCune-Albright Syndrome feel less pain and improve their condition compared to a placebo.
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Registry for patients with Fibrous Dysplasia and McCune-Albright Syndrome
This study is asking patients with fibrous dysplasia and McCune-Albright syndrome to share their experiences through surveys to help understand the condition better and improve future care.
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Patterns and links in fibrous dysplasia, McCune‑Albright, and Mazabraud cases
This project collects clinical records, imaging, and tumor tissue from people with fibrous dysplasia, McCune‑Albright, or Mazabraud syndrome to see if specific genetic and radiologic patterns link with symptoms and outcomes.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.