Registry for patients with Fibrous Dysplasia and McCune-Albright Syndrome
Official title: Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry
Run by Fibrous Dysplasia Foundation · NCT03231644 · Data updated 2026-11-12
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.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 600 (estimated) |
| Sponsor | Fibrous Dysplasia Foundation Academic / other |
| Locations | 1 site (Bethesda, Maryland) |
| Status | Recruiting |
| Started | October 31, 2016 |
| Main results expected | October 2028 |
| Study ends | October 2028 |
| Registry record updated | August 12, 2025 |
| Trial ID | NCT03231644 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this registry include individuals diagnosed with fibrous dysplasia, McCune-Albright syndrome, or Mazabraud's syndrome.
✕Probably not a fit
Patients without a clinical diagnosis of fibrous dysplasia, McCune-Albright syndrome, or Mazabraud's syndrome may not benefit from participating in this registry.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
The FD/MAS Patient Registry is an observational research initiative that invites patients and their families to share their experiences with fibrous dysplasia and McCune-Albright syndrome through a series of questionnaires. These surveys, developed in collaboration with patients, clinicians, and researchers, aim to gather data on the natural history of the disease, patient experiences, treatment effectiveness, and quality of life impacts. The information collected will help answer critical questions about the condition and guide future research and support programs.
Why it matters
Potential benefit: If successful, this registry could enhance understanding of fibrous dysplasia and McCune-Albright syndrome, leading to improved patient care and targeted research efforts.
How similar studies have gone: Other patient registries have shown success in gathering valuable data and improving understanding of rare diseases, making this approach promising.
Who can join: the full rules
Show full inclusion / exclusion criteria
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
Where it's running
-
Tovah Burstein
Bethesda, Maryland, United States Recruiting
Study contacts
- Study coordinator: Carmel Shemmesh-Rafalowsky
- Email: PI.Registry@fibrousdysplasia.org
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
-
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.
-
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.
-
Patient-specific 3D-printed titanium implants for facial reconstruction
This study tests whether custom-made 3D-printed titanium facial implants can improve reconstruction and appearance for adults with facial bone defects or asymmetry.
-
Understanding the natural history of Polyostotic Fibrous Dysplasia and McCune-Albright Syndrome
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.
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.