Screening and Natural History of Patients With Polyostotic Fibrous Dysplasia and the McCune-Albright Syndrome

Launched by NATIONAL INSTITUTE OF DENTAL AND CRANIOFACIAL RESEARCH (NIDCR) · Nov 3, 1999

Keywords

ClinConnect Summary

This clinical trial is studying a condition called Polyostotic Fibrous Dysplasia (PFD) and its association with McCune-Albright Syndrome (MAS). PFD affects the bones, causing them to be replaced by abnormal tissue, which can lead to pain, deformities, and fractures. The goal of the trial is to better understand how this disease progresses over time and to collect valuable information and tissue samples from patients. By doing this, researchers hope to learn more about the disease's behavior and develop improved treatments in the future.

Anyone aged one day and older who has or may have PFD or MAS is eligible to participate, as long as they are willing to cooperate with evaluations. Participants can expect to attend clinical visits where their health will be monitored, and they may provide tissue samples for research. This study is important because it aims to fill gaps in knowledge about these conditions and help identify better ways to manage them.

Gender

ALL

Eligibility criteria

• • INCLUSION CRITERIA
• • 1. Any patient, age 1 day of life and older, with a likelihood of having PFD or MAS, based on information from an appropriate referring physician or surgeon or provided by the patient or guardian. The diagnosis will be based on typical findings on bone biopsy or on clinical grounds.
• • EXCLUSION CRITERIA
• • 1. Patient, child or parent/guardian unwilling to fully cooperate with the evaluations.
• • 2. Patient or parent/guardian unable to provide informed consent.