Transcontinental Practice Patterns in Pediatric Recurrent Focal Segmental Glomerulosclerosis: Barriers to Consensus and Adequately Powered Studies

Background: Clinical practice variation in the management of recurrent idiopathic focal segmental glomerulosclerosis (rFSGS) is poorly defined and likely hinders successful clinical trial design. Methods: We conducted an online survey between June 2024 and September 2024 of Pediatric Nephrology Research Consortium (PNRC) and European Society for Pediatric Nephrology (ESPN) members to evaluate global clinical practice patterns in the management of pediatric rFSGS and physician perceptions of barriers to rFSGS clinical trial participation. Results: Of 120 responses (50 PNRC members from the US and Canada and 70 ESPN members from Europe, Asia, and South America), all respondents were physicians and 50% were transplant program medical directors. Pretransplant mutation analysis was routine in 104 (87%) centers, and native nephrectomy was routine for patients with and without hypoalbuminemia in 77 (66%) and 23 (19%) centers, respectively. Forty-two (35%) centers reported routine therapeutic interventions to prevent rFSGS prior to kidney transplantation; this increased to 79 centers (66%) in patients with previous recurrence. Plasmapheresis was the first therapeutic intervention in most centers, although it was used significantly more often in North America (96%) than Europe (77%; p = 0.005). Rituximab was administered in 102 (85%) centers as treatment for rFSGS. Common barriers to recruitment and inclusion of patients in clinical trials of rFSGS were limited site resources (36%), recipient/family reluctance (10%), and operational and logistical issues (26%). Conclusions: Heterogeneity of practice patterns in the management of pediatric rFSGS and barriers to clinical trials requires collaborative efforts to study and reach consensus on prevention and management of rFSGS.