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Table 5 Summary of Prospective Studies in Glomerular Research

From: The rationale and design of Insight into Nephrotic Syndrome: Investigating Genes, Health and Therapeutics (INSIGHT): a prospective cohort study of childhood nephrotic syndrome

Description INSIGHT Neptune PodoNet Radar
Target N 300a 450 1472b Not specified
# of centres 1a 15 85 Not specified
Length of follow-up 60 months 30 months Not specified Not specified
Main inclusion criteria Presumed idiopathic nephrotic syndrome Nephrotic syndrome-indicated renal biopsyc Steroid resistant nephrotic syndrome Steroid resistant nephrotic syndrome
Child Data     
Demographics x x   
Ethnicity & immigration x Not specified   
Birth history x    
Family medical history x    
Child allergy history x    
Child comorbidity history (fever, viral illness, TB, jaundice, malaria) x    
Medication adherence x    
McMaster Family Assessment Device (FAD) x    
Reproductive history x    
Health behaviour and social history (i.e. substance use) x    
Quality of life x x   
PROMIS Survey   x   
Beck Depression Inventory   x   
Modified Mini-Mental State Exam   x   
Parent or Caregiver Data     
Demographics x    
Ethnicity & immigration x    
Family Environment x    
McMaster Family Assessment Device (FAD) x    
Patient Health Questionnaire for Depression and Anxiety (PHQ-4) x    
Pregnancy information & assessment of in-utero exposures x    
Parent perspectives on genetic testing x    
Shortened Test of Functional Health Literacy Assessment (S-TOFHLA) x    
Biorepository & Clinical Information     
Ongoing assessment of relapses x Not specified   Not specified
Medications history and changes x x   Not specified
Standardized genetic workup    x x
Blood collection x x x x
Urine collection x x x  
Nail clipping x x   
Clinical progress (unspecified) x x x x
  1. a With ongoing recruitment and expansion.
  2. b Current enrollment, unspecified target.
  3. c Presumed MCNS, FSGS, MGN, MPGN.