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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.