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.