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Transcontinental Practice Patterns in Pediatric Recurrent Focal Segmental Glomerulosclerosis: Barriers to Consensus
Priya S Verghese1, Michelle Rheault2, Deborah Matossian1
1Division of Nephrology, Ann & Robert H. Lurie Children's Hospital of Chicago; Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Clinical practice for pediatric recurrent focal segmental glomerulosclerosis (rFSGS) varies globally. Addressing these practice variations and clinical trial barriers is crucial for improving rFSGS management.
Area of Science:
- Nephrology
- Pediatric Nephrology
- Clinical Trials
Background:
- Clinical practice variation in managing recurrent idiopathic focal segmental glomerulosclerosis (rFSGS) is poorly defined.
- This variation likely hinders successful clinical trial design for pediatric rFSGS.
Purpose of the Study:
- To evaluate global clinical practice patterns in pediatric rFSGS management.
- To assess physician perceptions of barriers to rFSGS clinical trial participation.
Main Methods:
- An online survey was conducted from June to September 2024.
- Participants included members of the Pediatric Nephrology Research Consortium (PNRC) and the European Society for Pediatric Nephrology (ESPN).
Main Results:
- 120 physicians responded, with varying practices in pretransplant mutation analysis, native nephrectomy, and therapeutic interventions.
- Plasmapheresis and Rituximab were common treatments, with regional differences in plasmapheresis use.
- Key barriers to clinical trials included limited site resources, recipient/family reluctance, and operational issues.
Conclusions:
- Significant heterogeneity exists in pediatric rFSGS management practices globally.
- Barriers to clinical trials necessitate collaborative efforts to establish consensus on rFSGS prevention and management.
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