Effectiveness of Medical Management of Fibrous Dysplasia of Bone.

NCT ID: NCT05422833

Last Updated: 2022-06-21

Basic Information

• Recruitment Status: COMPLETED
• Total Enrollment: 528 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 1996-01-31
• Study Completion Date: 2019-12-31

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).

Conditions

Fibrous Dysplasia of Bone; McCune Albright Syndrome

Study Design

• Observational Model Type: COHORT
• Study Time Perspective: RETROSPECTIVE

Study Groups

Before

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.

Evaluation and analysis of clinical data

Intervention Type: 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.

After

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.

Evaluation and analysis of clinical data

Intervention Type: 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.

Interventions

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.

Intervention Type: OTHER

Eligibility Criteria

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

• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

Hospices Civils de Lyon

OTHER

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Locations

rheumatology department, hopital Edouard Herriot

Lyon, , France

Countries

France

Other Identifiers

370

Identifier Type: -

Identifier Source: org_study_id