Table 5

Summary of Prospective Studies in Glomerular Research
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

a With ongoing recruitment and expansion.

b Current enrollment, unspecified target.

c Presumed MCNS, FSGS, MGN, MPGN.

Hussain et al.

Hussain et al. BMC Nephrology 2013 14:25   doi:10.1186/1471-2369-14-25

Open Data