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

Neesha Hussain2, J Anastasia Zello6, Jovanka Vasilevska-Ristovska2, Tonny M Banh4, Viral P Patel4, Pranali Patel7, Christopher D Battiston2, Diane Hebert14, Christoph P B Licht14, Tino D Piscione14 and Rulan S Parekh12345*

Author Affiliations

1 Division of Nephrology, The Hospital for Sick Children, 555 University Avenue, M5G 1X8, Toronto, ON, Canada

2 Child Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, 555 University Avenue, M5G 1X8, Toronto, ON, Canada

3 University Health Network, 190 Elizabeth Street, M5G 2C4, Toronto, ON, Canada

4 University of Toronto, 27 King’s College Circle, M5S 1A1, Toronto, ON, Canada

5 Dalla Lana School of Public Health, University of Toronto, 27 King’s College Circle, M5S 1A1, Toronto, ON, Canada

6 University of Saskatchewan, 105 Administration Place, S7N 5A2, Saskatoon, SK, Canada

7 Genetic and Genome Biology, Research Institute, The Hospital for Sick Children, 555 University Avenue, M5G 1X8, Toronto, ON, Canada

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BMC Nephrology 2013, 14:25  doi:10.1186/1471-2369-14-25

Published: 26 January 2013

Abstract

Background

Nephrotic syndrome is one of the most commonly diagnosed kidney diseases in childhood and its progressive forms can lead to chronic kidney disease (CKD) and/or end-stage renal disease (ESRD). There have been few longitudinal studies among a multi-ethnic cohort to determine potential risk factors influencing disease susceptibility, treatment response, and progression of nephrotic syndrome. Temporal relationships cannot be studied through cross-sectional study design. Understanding the interaction between various factors is critical to developing new strategies for treating children with kidney disease. We present the rationale and the study design of a longitudinal cohort study of children with nephrotic syndrome, the Insight into Nephrotic Syndrome: Investigating Genes, Health and Therapeutics (INSIGHT) study. The specific aims are to determine: 1) socio-demographic, environmental, and genetic factors that influence disease susceptibility; 2) rates of steroid treatment resistance and steroid treatment dependence, and identify factors that may modify treatment response; 3) clinical and genetic factors that influence disease susceptibility and progression to CKD and ESRD; and 4) the interaction between the course of illness and socio-demographic, environmental, and clinical risk factors.

Methods/design

INSIGHT is a disease-based observational longitudinal cohort study of children with nephrotic syndrome. At baseline, participants complete questionnaires and provide biological specimen samples (blood, urine, and toenail clippings). Follow-up questionnaires and repeat biological specimen collections are performed annually for up to five years.

Discussion

The proposed cohort will provide the structure to test various risk factors predicting or influencing disease susceptibility, treatment response, and progression to CKD among children with nephrotic syndrome.

Trial registration

ClinicalTrials.gov Identifier NCT01605266.

Keywords:
Children; Nephrotic syndrome; Cohort; Chronic kidney disease; FSGS; Minimal change disease; Study protocol