Research

INSIGHT Subsites

The Hospital for Sick Children (SickKids- Lead Site), Brampton Civic Hospital, Scarborough Centenary, Dr. Levin’s community practice, and McMaster Children’s Hospital and additional Canadian sites (CHILDNEPH sites – McGill University (Montreal); University of Manitoba (Winnipeg); IWK Health Centre (Halifax), London Health Sciences Centre (London), CHEO (Ottawa); and sites with collected DNA – Calgary, Vancouver, Edmonton).

To date, we have recruited over 95 per cent of families approached and over 85 per cent have provided blood or saliva.

We will validate genetic findings in existing international multi-ethnic cohorts at Great Ormond Street Hospital (GOSH21; Dr. Downie), Robert-Debré Hopital, Paris France (Nephrovir22,64; Dr. Dossier), and Childhood Nephrotic Syndrome, co-led by Dr. Rulan Parekh as part of the Human Heredity and Health in Africa (H3Africa65; Dr. Adu).

Biorepository for blood, urine and saliva

We collect, store for future use, and analyze biospecimens (blood, urine and saliva) to determine risk factors for, and longitudinal outcomes of kidney disease.

The INSIGHT biorepository uses the SickKids Central Biobank for specimen management, which allows for tracking of samples from collection, processing, and freezing, through to use for analyses.

Dry lab focused on clinical research

Clinical data is manually abstracted from participants’ medical records on an annual basis as per study protocol using standardized abstraction forms. This data includes (but is not limited to): relapses, prescribed medications, biopsy results, and height, weight and blood pressure data from at least one clinic visit per year. Laboratory data from the same clinic visit are also abstracted.

Publications

Nowrin F Aman, Jessica Fitzpatrick, Isabel de Verteuil, Jovanka Vasilevska-Ristovksa, Tonny Hue Minh Banh, Daphne J Korczak, Rulan S Parekh. Family functioning and quality of life among children with nephrotic syndrome during the first pandemic wave. Pediatr Nephrol. Dec 2022
Shawn Khullar , Tonny Banh, Jovanka Vasilevska-Ristovska, Rahul Chanchlani, Josefina Brooke, Christoph P B Licht, Michele Reddon, Seetha Radhakrishnan, Monica Piekut, Valerie Langlois, Kim Aitken-Menezes, Rachel J Pearl, Diane Hebert, Damien Noone, Rulan S Parekh. Impact of steroids and steroid-sparing agents on quality of life in children with nephrotic syndrome. Pediatr Nephrol. Jan 2021
Shivraj Singh Riar, Tonny H M Bank, Karlota Borges, Padmaja Subbarao, Viral Patel, Jovanka Vasilevska-Ristovska, Rahul Chanchlani, Neesha Hussain-Shamsy, Damien-Noone, Diane Hebert, Christoph P B Licht, Valerie Langlois, Rachel J Pearl, Rulan S Parekh. Prevalence of Asthma and Allergies and Risk of Childhood Nephrotic Syndrome: Insight into Nephrotic Syndrome Cohort. J Pediatr. 2019 May
Simon A Carter, Shilan Mistry, Jessica Fitzpatrick, Tonny Banh, Diane Hebert, Valerie Langlois, Rachel J Pearl, Rahul Chanchlani, Christoph P B Licht, Seetha Radhakrishnan, Josefina Brooke, Michele Reddon, Leo Levin, Kimberly Aitken-Menezes, Damien Noone, Rulan S Parekh. Prediction of Short- and Long-Term Outcomes in Childhood Nephrotic Syndrome. Kidney Int rep. Dec 2019
Natalia Konstantelos, Tonny Banh, Viral Patel, Jovanka Vasilevska-Ristovska, Karlota Borges, Neesha Hussain-Shamsy, Damien Noone, Diane Hebert, Seetha Radhakrishnan, Christoph P B Licht, Valerie Langlois, Rachel J Pearl, Rulan S Parekh. Association of low birth weight and prematurity with clinical ourcomes of childhood nephrotic syndrome: a prospective cohort study. Pediatr Nephrol. Sept 2019
Karlota Borges, Cathryn Sibbald, Neesha Hussain-Shamsy, Jovanka Vasilevska-Ristovska, Tonny Banh, Viral Patel, Josefina Brooke, Monica Piekut, Michele Reddon, Kimberly Aitken-Menezes, Ashley McNaughton, Rachel J Pearl, Valerie Langlois, Seetha Radhakrishnan, Christoph P B Licht, Tino D Piscione, Leo Levin, Damien Noone, Diane Hebert, Rulan S Parekh. Parental Health Literacy and Outcomes of Childhood Nephrotic Syndrome. Pediatrics March 2017
Karlota Borges, Jovanka Vasilevska-Ristovska, Neesha Hussain-Shamsy, Viral Patel, Tonny Banh, Diane Hebert, Rachel J. Pearl, Seetha Radhakrishnan, Tino D. Piscione, Christoph P. B. Licht, Valerie Langlois, Leo Levin, Lisa Strug, and Rulan S. Parekh. Parental attitudes to genetic testing differ by ethnicity and immigration in childhood nephrotic syndrome: a cross-sectional study. Can J Kidney Health Dis. March 2016
Tonny H M Banh, Neesha Hussain-Shamsy, Viral Patel, Jovanka Vasilevska-Ristovska, Karlota Borges, Cathryn Sibbald, Deborah Lipszyc, Josefina Brooke, Denis Geary, Valerie Langlois, Michele Reddon, Rachel Pearl, Leo Levin, Monica Piekut, Christoph P B Licht, Seetha Radhakrishnan, Kimberly Aitken-Menezes, Elizabeth Harvey, Diane Hebert, Tino D Piscione, Rulan S Parekh. Ethnic Differences in Incidence and Outcomes of Childhood Nephrotic Syndrome. Clin J Am Soc Nephrol Oct 2016
Mandy G Keijzer-Veen , Diane Hebert, Rulan S Parekh, INSIGHT Group. Rituximab for patients with nephrotic syndrome Lancet. Jan 2015
Neesha Hussain, J Anastasia Zello, Jovanka Vasilevska-Ristovska, Tonny M Banh, Viral P Patel, Pranali Patel, Christopher D Battiston, Diane Hebert, Christoph P B Licht, Tino D Piscione, Rulan S Parekh. The rationale and design of Insight into Nephrotic Syndrome: Investigating Genes, Health and Therapeutics (INSIGHT): a prospective cohort study of childhood nephrotic syndrome. BMC Nephrol. Jan 2013

Collaborations

The Nephrotic Syndrome Foundation is a non-profit organization supporting those diagnosed with Nephrotic Syndrome, their families and the ongoing search for a cure. Our goal is to meet each family and child in these tough times and lift each one up as best we can by providing financial and emotional support to help them weather the times to better health, acceptance, and adjustment. We offer 8 patient programs, including Backpacks of Hope and an in-person family camp, that are FREE to young warriors and their families.