Fibrous Dysplasia of Bone, McCune Albright Syndrome
Conditions
Keywords
Fibrous Dysplasia of Bone, McCune Albright Syndrome, rare, bone disease, healthcare organization
Brief 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).
Interventions
OTHEREvaluation 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.
Sponsors
Hospices Civils de Lyon
Study design
Observational model
COHORT
Time perspective
RETROSPECTIVE
Eligibility
Sex/Gender
ALL
Healthy volunteers
No
Inclusion criteria
We have included children and adults with FD/MAS who visited at least once in our center (outpatient and hospitalized patients). The diagnosis was established by an expert of the center, based on clinical, biological, imaging and/or histological arguments
Exclusion criteria
The absence of detectable bone lesion
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| to compare time elapsed between first symptomes or discovery of bone lesions and the diagnosis of FD | 1996-2019 | The main objective was to compare time elapsed between first symptomes or discovery of bone lesions and the diagnosis of FD, over 2 periods of time: 1996-2006 (before certification) and 2007-2019 (after certification). |
Countries
France
Outcome results
None listed