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INSIGHT is a longitudinal study of childhood nephrotic syndrome to determine genetic, serologic and environmental factors contributing to nephrotic syndrome and disease progression.
INSIGHT is a longitudinal observational study of childhood nephrotic syndrome to determine genetic, serologic and environmental factors contributing to nephrotic syndrome and disease progression. This is a large multiethnic cohort to test hypotheses of gene and environmental risk factors and disease progression. Participants are recruited from Toronto, Ontario and surrounding regions. Additional sites will be added on in the future.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Nephrotic Syndrome | The cohort includes all children diagnosed with nephrotic syndrome between ages 1-18. Children and their caregiver must be willing to provide informed consent, complete questionnaires, and provide biospecimens of the child. Those with secondary causes of nephrotic syndrome and/or systemic disease are excluded. |
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| Measure | Description | Time Frame |
|---|---|---|
| Relapse (number of relapses) | After remission, an increase in the first AM morning urine protein ≥ 3+ for 3 consecutive days or increase in maintenance prednisone dose | Entire follow-up |
| Measure | Description | Time Frame |
|---|---|---|
| Frequently relapsing NS (yes or no) | 4 or more relapses within any 12 month interval OR 2 or more relapses within the first 6 months since diagnosis | 6, 12, 18 and 24 months |
| Steroid - dependent NS (yes or no) |
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Inclusion Criteria:
Exclusion Criteria:
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Children with nephrotic syndrome. Children are recruited from Toronto and surrounding region with additional sites added later.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Rulan Parekh, MD | Contact | 416-813-7654 | 306459 | rulan.parekh@sickkids.ca |
| Name | Affiliation | Role |
|---|---|---|
| Rulan Parekh, MD | The Hospital for Sick Children | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| William Osler Health System, Brampton Civic Hospital and Peel Memorial Centre for Integrated Health and Wellness | Recruiting | Brampton | Ontario | L6R 3J7 | Canada |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 23351121 | Background | Hussain N, Zello JA, Vasilevska-Ristovska J, Banh TM, Patel VP, Patel P, Battiston CD, Hebert D, Licht CP, Piscione TD, Parekh RS. 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. 2013 Jan 26;14:25. doi: 10.1186/1471-2369-14-25. | |
| 26998310 |
| Label | URL |
|---|---|
| PubMed: The rationale and design of Insight into Nephrotic Syndrome: Investigating Genes, Health and Therapeutics (INSIGHT): a prospective cohort study of childhood nephrotic syndrome. | View source |
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| ID | Term |
|---|---|
| D009404 | Nephrotic Syndrome |
| D007674 | Kidney Diseases |
| D009402 | Nephrosis, Lipoid |
| D005923 | Glomerulosclerosis, Focal Segmental |
| ID | Term |
|---|---|
| D009401 | Nephrosis |
| D014570 | Urologic Diseases |
| D052776 | Female Urogenital Diseases |
| D005261 | Female Urogenital Diseases and Pregnancy Complications |
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Blood is drawn for DNA, serum, plasma, buffy coat and whole blood. Urine and toenail clippings are also collected.
2 relapses during steroid taper or a relapse within 14 days of steroid discontinuation
| 6, 12, 18 and 24 months |
| Initial Steroid Resistance (yes or no) | Commencing second line medication due to no response from prednisone with initial treatment | Up to 16 weeks |
| CKD (yes or no) | eGFR less than or equal to 60mg/ml/1.73m^2 for 3 or more consecutive months | Entire follow-up |
| ESRD (yes or no) | eGFR less than or equal to 15 mg/ml/1.73m^2, or initiation of dialysis or receiving a transplant. | Entire follow-up |
| Hamilton Health Sciences Corporation - McMaster University Medical Centre | Recruiting | Hamilton | Ontario | L8L 8E7 | Canada |
|
| Rouge Valley Health System, Rouge Valley Centenary | Recruiting | Scarborough Village | Ontario | M1E 4B9 | Canada |
|
| The Hospital for Sick Children | Recruiting | Toronto | Ontario | M5G 1X8 | Canada |
|
| Result |
| Borges K, Vasilevska-Ristovska J, Hussain-Shamsy N, Patel V, Banh T, Hebert D, Pearl RJ, Radhakrishnan S, Piscione TD, Licht CP, Langlois V, Levin L, Strug L, Parekh RS. Parental attitudes to genetic testing differ by ethnicity and immigration in childhood nephrotic syndrome: a cross-sectional study. Can J Kidney Health Dis. 2016 Mar 17;3:16. doi: 10.1186/s40697-016-0104-y. eCollection 2016. |
| 27445165 | Result | Banh THM, Hussain-Shamsy N, Patel V, Vasilevska-Ristovska J, Borges K, Sibbald C, Lipszyc D, Brooke J, Geary D, Langlois V, Reddon M, Pearl R, Levin L, Piekut M, Licht CPB, Radhakrishnan S, Aitken-Menezes K, Harvey E, Hebert D, Piscione TD, Parekh RS. Ethnic Differences in Incidence and Outcomes of Childhood Nephrotic Syndrome. Clin J Am Soc Nephrol. 2016 Oct 7;11(10):1760-1768. doi: 10.2215/CJN.00380116. Epub 2016 Jul 21. |
| 28213606 | Result | Borges K, Sibbald C, Hussain-Shamsy N, Vasilevska-Ristovska J, Banh T, Patel V, Brooke J, Piekut M, Reddon M, Aitken-Menezes K, McNaughton A, Pearl RJ, Langlois V, Radhakrishnan S, Licht CPB, Piscione TD, Levin L, Noone D, Hebert D, Parekh RS. Parental Health Literacy and Outcomes of Childhood Nephrotic Syndrome. Pediatrics. 2017 Mar;139(3):e20161961. doi: 10.1542/peds.2016-1961. Epub 2017 Feb 17. |
| 30976899 | Result | Konstantelos N, Banh T, Patel V, Vasilevska-Ristovska J, Borges K, Hussain-Shamsy N, Noone D, Hebert D, Radhakrishnan S, Licht CPB, Langlois V, Pearl RJ, Parekh RS. Association of low birth weight and prematurity with clinical outcomes of childhood nephrotic syndrome: a prospective cohort study. Pediatr Nephrol. 2019 Sep;34(9):1599-1605. doi: 10.1007/s00467-019-04255-1. Epub 2019 Apr 11. |
| 30732999 | Result | Riar SS, Banh THM, Borges K, Subbarao P, Patel V, Vasilevska-Ristovska J, Chanchlani R, Hussain-Shamsy N, Noone D, Hebert D, Licht CPB, Langlois V, Pearl RJ, Parekh RS. Prevalence of Asthma and Allergies and Risk of Relapse in Childhood Nephrotic Syndrome: Insight into Nephrotic Syndrome Cohort. J Pediatr. 2019 May;208:251-257.e1. doi: 10.1016/j.jpeds.2018.12.048. Epub 2019 Feb 4. |
| 41091558 | Derived | Robinson CH, Aman N, Banh THM, Brooke J, Dhillon V, Garner M, Licht C, McKay A, Pearl R, Radhakrishnan S, Rasool K, Selvathesan N, Teoh CW, Vasilevska-Ristovska J, Parekh RS. Challenging Clinical Practice Guideline Definitions in Childhood Nephrotic Syndrome. Clin J Am Soc Nephrol. 2025 Dec 1;20(12):1767-1779. doi: 10.2215/CJN.0000000842. Epub 2025 Oct 15. |
| 39710174 | Derived | Robinson C, Wagner S, Aman N, Banh THM, Dhillon V, Langlois V, Licht C, McKay A, Noone D, Pearl R, Radhakrishnan S, Teoh CW, Vasilevska-Ristovska J, Parekh RS. Incidence and Risk Factors for Hypertension among Children with Nephrotic Syndrome. J Pediatr. 2025 Sep;284:114443. doi: 10.1016/j.jpeds.2024.114443. Epub 2024 Dec 20. |
| D000091642 | Urogenital Diseases |
| D052801 | Male Urogenital Diseases |
| D005921 | Glomerulonephritis |
| D009393 | Nephritis |