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