Registry for patients with Fibrous Dysplasia and McCune-Albright Syndrome
Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry
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 |
|---|---|
| Enrollment | 600 (estimated) |
| Sex | All |
| Sponsor | Fibrous Dysplasia Foundation Academic / other |
| Locations | 1 site (Bethesda, Maryland) |
| Trial ID | NCT03231644 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates for this registry include individuals diagnosed with fibrous dysplasia, McCune-Albright syndrome, or Mazabraud's syndrome.
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.
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 performed: Other patient registries have shown success in gathering valuable data and improving understanding of rare diseases, making this approach promising.
Eligibility criteria
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 this trial is running
Bethesda, Maryland
- Tovah Burstein — Bethesda, Maryland, United States (Recruiting)
Study contacts
- Study coordinator: Carmel Shemmesh-Rafalowsky
- Email: PI.Registry@fibrousdysplasia.org
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.