Effectiveness of Medical Management of Fibrous Dysplasia of Bone.

NCT05422833 | Completed

• 1 other identifier: 370
• Study Type: observational
• Target: 528
• Locations: 1 country
• Sites: 1

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

Keywords

Fibrous Dysplasia of Bone; McCune Albright Syndrome; rare; bone disease; healthcare organization

Outcome Measures

Primary Outcomes (1)

• 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

Study Arms (2)

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.

Other: Evaluation and analysis of clinical data

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.

Other: Evaluation and analysis of clinical data

Interventions

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.

After; Before

Eligibility Criteria

• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Children and adults with FD/MAS who visited at least once in our center

You may qualify if:

• 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

You may not qualify if:

• The absence of detectable bone lesion

Sponsors & Collaborators

• Hospices Civils de Lyon: lead

Study Sites (1)

rheumatology department, hopital Edouard Herriot

Lyon, 69003, France

Location

MeSH Terms

Conditions

Fibrous Dysplasia of Bone; Fibrous Dysplasia, Polyostotic; Bone Diseases

Condition Hierarchy (Ancestors)

Osteochondrodysplasias; Bone Diseases, Developmental; Musculoskeletal Diseases

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: RETROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: May 10, 2022
• First Posted: June 21, 2022
• Study Start: January 1, 1996
• Primary Completion: December 1, 2019
• Study Completion: December 1, 2019
• Last Updated: June 21, 2022

Record last verified: 2022-06

Locations

FR (1)