Effectiveness of Medical Management of Fibrous Dysplasia of Bone.

Study Overview
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Brief Summary
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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).

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

Conditions
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Fibrous Dysplasia of Bone, McCune Albright Syndrome

Intervention / Treatment
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* Other: Evaluation and analysis of clinical data


Participation Criteria
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Eligibility Criteria
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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
Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Before<br>Children and adults with FD/MAS who visited at least once in our center (outpatient and hospitalized patients). and with the first visit in the center included between 1996 and 2006 - before certification of our center. | Other: Evaluation and analysis of clinical data<br>* 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.<br>|
| After<br>Children and adults with FD/MAS who visited at least once in our center (outpatient and hospitalized patients). and with the first visit in the center included between 2007 and 2019 - after certification of our center. | Other: Evaluation and analysis of clinical data<br>* 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.<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| to compare time elapsed between first symptomes or discovery of bone lesions and the diagnosis of FD | 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). | 1996-2019 | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Fibrous Dysplasia of Bone, McCune Albright Syndrome, rare, bone disease, healthcare organization