Table 2.

Gaps in knowledge.

Gaps in knowledge	Opportunities to address
Life-course effects of childhood NS	Registries of childhood onset nephrotic syndrome
Are there risks of SSNS after 30 years? Are patients with childhood onset NS at higher risk of hypertension, CKD, and ESRD?	cNEPTUNE (pediatric cohort of incident nephrotic syndrome patients)
Genetic factors and biomarkers	Multicenter collaborative cohorts of pediatric onset NS
Can permeability factors or other biomarkers enable personalized approach to treatment?
Can screening for genetic mutations or APOL1 variants in childhood onset NS stratify those children at highest risk for hypertension and renal disease in adulthood?
Psychosocial impact and patient-reported outcomes	Multicenter collaborative cohorts of pediatric onset NS
Quality of life is significantly affected in childhood onset NS, particularly with severe disease. What is the effect on patient-reported outcomes? What is the long-term effect on educational status, employment and marital/stable relationships and are there interventions to improve outcomes?
Transition into adulthood	Registries and multicenter collaborative cohorts of pediatric onset NS
(1) When should children with NS receive counseling about potential risks in adulthood?
(2) How will adult providers be made aware of potential for complications in adults with a history of childhood NS?
(3) Are screenings for artherosclerosis, osteoporosis, cataracts, infertility, and/or malignancy indicated?
(4) What is the optimal transition plan for children with SSNS as they enter adulthood?