CAPN png combined


February 26, 2024

Research studies


CHILDNEPH focuses on children with nephrotic syndrome, a relapsing disease that often occurs in young children.

Who we are:

Principal Investigator: Susan Samuel (University of Calgary)

Investigators: Steven Arora, Genevieve Benoit, Martin Bitzan, Anke Banks, Rahul Chanchlani, Allison Dart, Allison Eddy, Robin Erickson, Janusz Feber, Guido Filler, Pavel Geier, Silviu Grisaru, Anne-Laure Lapeyraque, Cherry Mammen, Catherine Morgan, Daniel Muruve, Alberto Nettel-Aguirre, Rulan Parekh, Ciriaco Piccirillo, Maury Pinsk, Pietro Ravani, Shannon Scott, Tomoko Takano, James Tee, Andrew Wade, Michael Zappitelli

Study Staff: Sudeshna Battacharya, Mikaeel Ghany, Susan McMurrich, Alanna deMello, Marta Kobryznski, Giuseppe Pascale, Maneka Perinpanayagam, Mike Pizzi, Laurel Ryan, Tracy Schwab, Jovanka Vasilevska-Ristovska, Jian Yang

Trainees: Esther Ekpe-Adewuyi (Post-doctoral Fellow), Tho Al-Aubodah (Graduate Student)

Family Representative: Andrea Galbraith

Scientific Advisory Committee (external members): Norman Rosenblum, Jonathan Craig, Michiel Schreuder, Nicholas Webb

What we do:

Nephrotic syndrome is the most common acquired kidney disease in children, but there has been very little advance in the understanding of pathogenesis or treatment protocols for decades. The CHILDNEPH Project is composed of four interdependent building blocks designed to improve care and outcomes for patients with nephrotic syndrome. Building block 600 dpi 1000x750

Nephrotic Syndrome Registry: We are conducting an observational longitudinal study to understand clinical course and outcomes of children with nephrotic syndrome in Canada. We want to find out whether variation in treatment for nephrotic syndrome that exists between centres and physicians, affects patient outcomes. Over 200 patients with new onset nephrotic syndrome have been enrolled across 12 participating sites, and recruitment will end in 2020 with 400 participants (projected).

Biospecimen Repository: We are building a biospecimen repository to provide foundational information regarding biological processes that lead to nephrotic syndrome, and regarding the potential use of predictive biomarkers to improve diagnosis, prognosis and treatment of nephrotic syndrome. There is a lack of human samples for discovery research in children with steroid sensitive nephrotic syndrome, and this has been a major road block to advancing understanding of disease pathogenesis and treatment. CHILDNEPH seeks to overcome this barrier, by collecting critical blood samples during relapse and remission of nephrotic syndrome.

Translational Medicine Research Program: We want to address the most vexing issues in the management of steroid sensitive nephrotic syndrome – how to accurately identify those who will respond to steroids, what is the relapse risk, and which steroid sparing agent will work best in which patient. To answer these questions, we are building an exciting translational medicine research program, by bringing together complementary and synergistic collaborations between biomedical and clinical nephrology researchers in Canada and internationally.

Personalized Treatments:  Our work will lead to the development of risk prediction models for treatment response and prognosis, and the use of advanced biomedical technologies and therapeutics to provide a personalized approach to care of patients with nephrotic syndrome, and ultimately improve patient outcomes and experience.

Join a study:

Would you like to help:

  • Build a registry for patients with nephrotic syndrome?
  • Identify differences in treatment for children/youth with nephrotic syndrome between different nephrology centres across Canada?
  • Assist us to develop strategies to optimize our care to patients?
  • To provide samples for a paediatric nephrotic syndrome biobank (blood, urine, saliva), which will drive future biomedical research in nephrotic syndrome?

If you have a child (or children) between the ages of 1 and 18, diagnosed with nephrotic syndrome at a pediatric nephrology clinic and are interested in participating, please contact Maneka Perinpanayagam (403-955-2467).

Study updates (downloadable PDFs)

December 2017

March 2017

February 2016

December 2014


Susan M. Samuel, MD MSc, Principal Investigator

Phone: (403) 955 7950

This email address is being protected from spambots. You need JavaScript enabled to view it., Project Coordinator

Phone: (403) 955-2467

Find us on twitter @childneph






Project Title: PROBE Multicentre Study (Pediatric Renal transplant Optimization with BiomarkErs)

Principal Investigator: Tom Blydt-Hansen

Is the study funded?      Yes

Is the study open for recruitment?          Yes (until summer 2017)

Are you soliciting new sites to participate?           No

Brief description of project:

The overall objective of this project is to address the need for a reliable and noninvasive test for serial allograft injury surveillance and to guide treatment. We hypothesize that the monitoring of urine metabolites and chemokines is superior to renal biopsy for detection and treatment of renal allograft injury. Currently there are no validated biomarkers to detect rejection in children and measures of renal function are insensitive forcing reliance on invasive surveillance kidney biopsy to diagnose renal injury. Acute change in glomerular filtration rate (GFR) does not indicate the nature of underlying injury, and by contrast, less fulminant injury is masked by compensatory hyperfiltration of remaining glomeruli. Such injury is termed sub-clinical but has nonetheless major consequences for allograft damage and survival. The main clinical challenge in managing children after kidney transplantation remains to balance the need for timely diagnosis and treatment of serious allograft injury, against the damage associated with invasive testing or over-immunosuppression. The aims of this project are:

Aim 1. Characterize urine metabolite and chemokine changes associated with kidney allograft injury. We will focus on common types of kidney allograft injury including cell-mediated acute rejection, polyoma BK virus nephropathy, calcineurin-inhibitors and ischemic acute kidney injury, to expand on an existing repertoire of urine metabolite and chemokine candidate biomarkers of acute rejection. We will collect samples at the time of every kidney biopsy (surveillance and for indication) to develop robust classifiers that distinguish the tissue injury(metabolites) and immune activation (chemokine) phenotype of both clinical and sub-clinical allograft injury. Sensitivity analysis will be used to establish biomarker classifiers for real-time clinical monitoring.

Aim 2. Establish the impact of sub-clinical allograft injury on outcome. We will determine exposure to sub-clinical allograft injury over the first year post-transplantation by serial measurement of urine metabolite and chemokine biomarkers, and determine the impact of this injury on allograft function, fibrosis and tubular atrophy (histology), and alloimmune memory response (donor-specific antibodies). These outcomes will be considered irrespective of renal biopsy-driven treatments, seeking instead to measure impact of injury that currently remains undetected.

Aim 3. Test a personalized approach for noninvasive urine monitoring and intervention. Using these validated biomarkers, we will enroll a new prospective cohort to pilot an intervention strategy based on real-time serial monitoring of urine to identify sub-clinical allograft injury and recommend diagnostic kidney biopsy for confirmation of injury phenotype and treatment. Outcome will be compared with the previous observational cohort.

Long-term outcomes of AKI

Project title: Long-term Outcomes of acute kidney injury

Principal Investigators: This email address is being protected from spambots. You need JavaScript enabled to view it. and This email address is being protected from spambots. You need JavaScript enabled to view it.

Is the study funded?           Yes     

Is the study open for recruitment?        Yes     

Are you soliciting new sites to participate?     No

Brief description of project: NA


TAKE-IT TOO: Teen Adherence in KidnEy transplant,

Improving Tracking To Optimize Outcomes

Principal Investigators:Dr. Bethany Foster

Montreal Children’s Hospital of the MUHC

Dr. Annette DeVito Dabbs (site PI)

University of Pittsburgh Medical Center (UPMC)

Project Summary: Medication non-adherence is a major problem in kidney transplant recipients, and is considered the most important factor limiting long-term graft survival; poor adherence results in significant morbidity, mortality and related costs. Young people 12-24 years of age are at particularly high risk for non-adherence and graft failure. Clinically feasible, effective interventions to improve adherence are urgently needed to improve survival and quality of life in this population. The goal of this prospective, 3-stage, sequential, multi-center study is to adapt the successful TAKE-IT intervention, previously tested in a controlled setting, for use in ‘real world’ clinical care. We will apply the principles of user-centered design and use stakeholders’ input to adapt the TAKE-IT intervention, and develop (in collaboration with Vaica Medical) a novel portable, multi-dose electronic medication-monitoring pillbox (e-pillbox). The specific aims of this study are: (1) To understand the needs and preferences of stakeholders (kidney transplant recipients, parents, and healthcare professionals (HCP)) in order to optimize the TAKE-IT intervention for ‘real world’ use; (2) To iteratively design and evaluate the usability and acceptability of an e-pillbox (with companion adherence-tracking website) with stakeholders in controlled and field settings; (3) To conduct a pilot cluster randomized trial (CRT) testing the adapted intervention, including the e-pillbox, to assess feasibility of a larger CRT, further refine the intervention, and estimate key statistical parameters needed to plan the future definitive CRT. In Stage 1 of this study, separate focus groups of patients and parents will be conducted at transplant centers in the United States and Canada to optimize effectiveness and acceptability of the multi-component intervention and inform e-pillbox design. Focus groups with HCP will identify ways to facilitate implementation of an adherence-promoting intervention in clinical practice. In Stage 2, patients will participate in a series of one-on-one device-development sessions, providing input and feedback on the usability and design of the e-pillbox. HCP will also provide input and feedback on the design of the adherence-tracking website. In Stage 3 patients will be randomized, by center, to the new intervention, or usual care (control), and their adherence measured with the e-pillbox.

Inclusion criteria: Stage 1

Patients: Prevalent renal transplant recipients 12-24 y, who are ≥3 months post-transplant will be eligible. A minimum of 3 months post-transplant (no max.) will ensure medical stability and a substantial risk of non-adherence; non-adherence increases with increasing time since transplant. Individuals with significant neurocognitive disabilities limiting their ability to understand and participate in their own care (as judged by the parents and the healthcare team) will be excluded, as will patients unable to communicate in English or French (Montreal only). Patients will be eligible to participate even if a parent does not participate.

Parents of prevalent renal transplant recipients 12-17 y (followed in a participating transplant center) will be eligible. Parents of patients 18-24 years old will be excluded as the older aged group is expected to be primarily responsible for their own care, independent of their parents. One parent per family will be eligible to avoid redundant representation. Parents will be eligible to participate even if their child does not participate.

Transplant Healthcare professionals (HCP) Because the organization of care and resources available may differ substantially between countries and across centers, we will include HCP at all 7 sites to ensure greater generalizability of results. HCP participants will include representatives from the variety of disciplines typically involved in promoting medication adherence as deemed appropriate from each center. Appendix C provides the numbers of each type of HCP available at each site.

AKI biomarkers in PICU

Project title: Biomarkers of AKI in the PICU: A Multicentre Canadian Study

Principal Investigator: This email address is being protected from spambots. You need JavaScript enabled to view it.

Is the study funded?           No      

Is the study open for recruitment?        Yes     

Are you soliciting new sites to participate?     This email address is being protected from spambots. You need JavaScript enabled to view it.

If so, is the study open to recruitment in the United States?: No

Brief description of project: A prospective observational ICU study of most non-cardiac children admitted to PICU.

Copyright 2012-2024 Canadian Association of Paediatric Nephrologists