Effectiveness of Medical Management of Fibrous Dysplasia of Bone.

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).

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Key information

Conditions

Fibrous Dysplasia Of Bone Bone Diseases Bone Diseases, Developmental Fibrous Dysplasia, Polyostotic McCune Albright Syndrome Musculoskeletal Diseases Osteochondrodysplasias

Sex eligibility

All sexes

Study type

Observational

Primary location

rheumatology department, hopital Edouard Herriot

Lyon, 69003, France

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Evaluation and analysis of clinical data

Other

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.

Primary outcomes

to compare time elapsed between first symptomes or discovery of bone lesions and the diagnosis of FD

Time frame: 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).

Sponsors and collaborators

Lead sponsor

Hospices Civils de Lyon

Other

Registry information

Official study title

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

Acronym: Efficience

Important dates

Study start: 1996
Primary completion: 2019
Study completion: 2019
First posted: Jun 21, 2022
Registry last updated: Jun 21, 2022

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

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This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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