An observational study in Fibrous Dysplasia of Bone, sponsored by Hospices Civils de Lyon. Recruiting at 16 sites in France. Open to participants aged 18 Years to 100 Years. Per ClinicalTrials.gov, last updated 2024-02-29.
Sponsored by Hospices Civils de Lyon · Observational
Fibrous dysplasia of bone /McCune Albright syndrome (FD/MAS) is a rare bone disease caused by somatic mutations in GNAS gene. This GNAS mutation predisposes to cancers, including breast cancer, thyroid cancer, chondrosarcoma and osteosarcoma, as well as biliary tract anomalies, liver-tumors or pancreatic tumors - IPMNs. Intraductal papillary and mucinous neoplasms of the pancreas (IPMN) are cystic intraepithelial ductal lesions developed at the expense of pancreatic ducts. They are pre-cancerous lesions, requiring monitoring and, in case of progression or malignant degeneration, surgical resection. Pancreatic MRI screening of patients with polyostotic FD and MAS is recommended.
The aim of this study is to investigate the epidemiology and characteristics of these hepato-pancreato-biliary abnormalities (prevalence, age of onset, degeneration), based on magnetic resonance imaging (MRI) realized during the follow-up of patients with FD/MAS treated in a French FD expert center.
A better understanding of these IPMNs and other digestive abnormalities will enable clinicians to improve the management and monitoring in this high-risk population.
28 studies on the registry are indexed under Fibrous Dysplasia of Bone; 6 are open to participants now.
This study's planned enrollment of 545 is above the median of 175 across 10 observational studies indexed under Fibrous Dysplasia of Bone.
Browse Fibrous Dysplasia of Bone studies →Hospices Civils de Lyon is the lead sponsor of 1,826 studies on the registry; 439 are open to participants now.
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Primary care clinic
Exclusion Criteria:
-Opposition to data collection
A retrospective data collection and statistical analyses will be performed. Adults with polyostotic fibrous dysplasia McCune Albright syndrome, who underwent an hepato-bilio-pancreatic MRI since January 2002, during their follow-up
Other: Screening for hepato-bilio-pancreatic abnormalities in Fibrous dysplasia of bone /McCune Albright syndrome , description and characterization of the lesions.
Data collection from hepato-bilio-pancreatic Magnetic Resonance Imaging realized during the follow up of patients with Fibrous dysplasia of bone /McCune Albright syndrome
Describe hepato-bilio-pancreatic abnormalities in FD/MAS and estimate the prevalence of IPMN.
Hepato-bilio-pancreatic abnormalities (size, number, complications) will be described based on hepato-bilio-pancreatic MRI.
Time frame: hepato-bilio-pancreatic MRI performed from January 2002 until December 2024.
Plan to share: No
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Hospices Civils de Lyon