Clinical Research Roundtable at the 2023 FD/MAS Community Conference and ICFDMAS meeting

The discussion revolves around fibrous dysplasia (FD), particularly focusing on registries, diagnosis rates, denosumab trials, sodium fluoride bone scanning, and potential collaborations for standardizing analysis methods. There is a suggestion to unify efforts in analyzing FD with sodium fluoride bone scans, considering different features and complexities. The potential use of denosumab in combination with low-dose analgesics is discussed, addressing the multiple mechanisms at play in FD. The issue of diagnosing asymptomatic monostotic lesions and the challenges of self-reported registries are highlighted.

The conversation delves into the complexity of FD, its diagnosis in both pediatric and adult populations, and the need for individualized treatment approaches. The potential of denosumab to alter lesions and its varied impact on pain in FD patients are explored. Concerns are expressed about the development of the immune system in children treated with denosumab, and the discussion touches on monitoring immune responses and potential risks. The rebound phenomenon is attributed to pre-existing osteoclasts, and the need to explore risk factors for robust rebound in FD patients is suggested.

The potential risk of spinal compression fractures after denosumab withdrawal is discussed, with emphasis on differences between FD and osteoporosis patients. The speakers stressed the importance of long-term follow-up data, cautioning about potential risks associated with denosumab withdrawal.

The need for expert centers and cautious use of denosumab in FD is emphasized, given the remaining questions and uncertainties in its application.

The FD/MAS Alliance Community Conference combined patient-centered science and real-world strategies for patients and families living with fibrous dysplasia, McCune-Albright syndrome (FD/MAS).

The FD/MAS Alliance (formerly Fibrous Dysplasia Foundation) is a community-driven 501c3 nonprofit that fosters the development of evidence-based treatments for Fibrous Dysplasia and McCune-Albright syndrome (FD/MAS). We advance research, provide education and channel the voices of individuals and caregivers with FD/MAS. To support our work visit www.fdmasalliance.org/donate.