NCT05422833

Effectiveness of Medical Management of Fibrous Dysplasia of Bone.

Effectiveness of Medical Management in the Field of Rare Diseases. The Example of Fibrous Dysplasia of Bone.

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: 528 (actual)
• Sponsor: Hospices Civils de Lyon · Academic / Other
• Sex: All
• Age: —
• Healthy volunteers: Not accepted

Summary

The objective of our study was to assess the effectiveness of our reference center since its constitution. In a retrospective cohort study, we compared the activity of our center, including the time elapsed between diagnosis and access to the center and the diagnostic delay of patients with fibrous dysplasia between two periods, 1996-2006 (before certification of our center) and 2007-2019 (after certification of our center).

Conditions

• Fibrous Dysplasia of Bone
• McCune Albright Syndrome

Interventions

Type	Name	Description
OTHER	Evaluation and analysis of clinical data	Evaluation and analysis of clinical data (baseline demographic features (sex, age at diagnosis, age at first symptoms, age at first visit), initial presenting symptoms, affected bone sites (monostotic FD or polyostotic FD), renal phosphate wasting, MAS, Mazabraud syndrome, endocrine disease, fractures, bone specific treatment especially bisphosphonate and surgery, pain and disease's severity.

Timeline

• Start date: 1996-01-01
• Primary completion: 2019-12-01
• Completion: 2019-12-01
• First posted: 2022-06-21
• Last updated: 2022-06-21

Locations

1 site across 1 country: France