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Research in pediatric nephrology

Free tools, educational resources, common funding sources, and links to pediatric nephrology research collaboratives

Tools

CKiD U25 GFR estimation

Derived using data from the Chronic Kidney Disease in Children Study (CKiD), the CKiD U25 GFR estimating equations (Pierce, et al. 2021) are latest and greatest iterations of estimating GFR in patients with CKID using serum creatinine and/or cystatin C.

  • kidney.wiki CKiD U25 GFR calculator
    • Citation information can be found in the “info” tab.
  • A downloadable spreadsheet is also available from kidney.wiki to help researchers calculate GFR on large data sets.
    • Citation information can be found in the spreadsheet documentation.
    • Download: Excel | Google Sheets
  • The CKiD website also offers files for implementing U25 GFR estimation in R, SAS, STATA and Excel.

Resources

Researcher Academy

The Elsevier Researcher Academy is an entirely free e-learning platform designed to unlock the potential of early and mid-career researchers. Here, you’ll learn how to obtain funding for your research and manage research data. Improve your writing skills and publish a research paper in a journal with a high impact factor. Learn how to review a paper effectively, and how to respond to reviewer comments. Discover how communicating your work can boost the impact of your research and help you garner citations.

ASN List of Fellow-Friendly Journals

A curated list of nephrology journals that are indexed in PubMed, publish case reports, and may or may not have fellow-specific sections.

Grants and Funding

American Society of Nephrology (ASN)

Collaboratives

Chronic Kidney Disease in Children (CKiD)

The Chronic Kidney Disease in Children Study is a multicenter, observational, prospective cohort of children, adolescents and young adults with a history of mild to moderately impaired kidney function.

European Study Consortium for Chronic Kidney Disorders Affected Pediatric Patients (ESCAPE)

The ESCAPE network is a consortium of European pediatric nephrologists dedicated to improving the lives of children with kidney diseases by clinical research. Their activities are focused on long-term natural history studies to identify novel prognostic biomarkers (e.g., HSP-70 in UTILISE), and interventional trials to develop therapeutic concepts with long-lasting benefit for the health and well-being of our patients (e.g., finerenone in FIONA). The 4C Study follows the cardiovascular status of 700 children with advanced CKD and the progression to ESKD. The randomized PREDICT Trial is evaluating the long-term benefit of primary antibiotic prophylaxis in children with VUR.

Other observational studies and registries include PodoNet for children with steroid resistant nephrotic syndrome, ARegPKD for children with autosomal recessive and ADPedKD for those with autosomal dominant polycystic kidney disease. They also use state of the art technologies to evaluate the health impact of certain therapies, such as hemodiafiltration in the 3H Study, acute dialysis in AKI (EurAKID), and peritoneal dialysis in the International Pediatric Peritoneal Biobank (IPPB).

Improving Carpediem™ Outcomes in Neonates and Infants through Collaboration (ICONIC)

The CArdio-Renal PEdiatric DIalysis Emergency Machine (Carpediem™) is the first dedicated platform in the United States to provide CKRT to neonates and young infants. Improving Carpediem™ Outcomes in Neonates and Infants through Collaboration (ICONIC) is a multicenter quality improvement and research registry dedicated to identifying best practices and treatment strategies to improve outcomes in this population. For more information, contact Cara Slagle (Twitter).

Improving Renal Outcomes Collaborative (IROC)

The Improving Renal Outcomes Collaborative (IROC) is a network-based learning health system of patients and caregivers, clinicians, and researchers from the most advanced pediatric institutions in the country. We work together to solve difficult problems for children with kidney disease by sharing best practices and data about medical care and health outcomes, and applying quality improvement methods to improve health outcomes.

International Pediatric Dialysis Network (IPDN)

The International Pediatric Dialysis Network is a global consortium of hundreds of pediatric nephrology centers dedicated to the care of children on chronic dialysis. IPDN entertains two registries: the International Pediatric Peritoneal dialysis Network (IPPN) registry for children on chronic peritoneal dialysis, and the International Pediatric Hemodialysis Network (IPHN) registry for children on hemodialysis. You can join the IPDN as an individual or as an institution. IPDN membership is free of charge.

Neonatal and Pediatric Heart Renal Outcomes Network (NEPHRON)

The Neonatal and Pediatric Heart and Renal Outcomes Network (NEPHRON) is a collaborative within the Pediatric Cardiac Critical Care Consortium (PC4). The NEPHRON registry was created to systematically study CS-AKI in a multicenter cohort of neonates following cardiac surgery. To be included in NEPHRON, patients must be from a center must be a surgical center participating in PC4. Find out more in the original paper [PMID 31107196].

Neonatal Kidney Collaborative (NKC)

The Neonatal Kidney Collaborative (NKC) was established in 2013 after a National Institutes of Health (NIH) multidisciplinary workshop on neonatal acute kidney injury (AKI) to address knowledge gaps highlighted at the workshop. The initial working group was composed of a neonatologists and pediatric nephrologists from 24 different international centers and now includes over 130 institutions. The first mission of the NKC was to develop, organize and perform the AWAKEN (Assessment of Worldwide Acute Kidney Injury) study [PMID 29732396]. Given the success of the AWAKEN study, early in 2019 the NKC reorganized and expanded its mission. The NKC welcomes proposals for secondary studies using the original data from AWAKEN, which included over 2000 NICU patients with a wide variety of gestational ages and diagnoses, as well as from PENUT and REPAIRED which included 900 extremely premature neonates.

North American Pediatric Renal Trials and Collaborative Studies (NAPRTCS)

NAPRTCS is the definitive source of information for serious kidney disease in children. NAPRTCS Registries include information from over 20,000 children with kidney transplants, on dialysis, or with chronic kidney disease from over 100 participating institutions in the United States, Canada, Mexico and Costa Rica. NAPRTCS has initiated eight NIH-funded prospective clinical trials resulting in over $20,000,000 of funding. NAPRTCS has also worked with major pharmaceutical companies to develop multi-center clinical trials.

NAPRTCS is the only registry to collect information on children at all stages of chronic kidney disease. As such, NAPRTCS is able to follow children as their chronic kidney disease progresses to end-stage kidney disease and continues to monitor their care after dialysis is initiated and/or a kidney transplant is performed. NAPRTCS’ clinical trials have enrolled more than 2000 children from over 90 participating centers.

Pediatric Nephrology Research Consortium (PNRC)

The PNRC is an organization that continues the same mission of the Midwest Pediatric Nephrology Consortium (MWPNC), which is to improve the care of pediatric patients with kidney disease and hypertension and facilitate collaborative research in the field of pediatric nephrology. The PNRC facilitates multi-center retrospective and prospective research that cannot be adequately addressed at a single center. The PNRC helps train the next generation of pediatric nephrology investigators by encouraging the development and research efforts of both fellow and junior faculty.

PEDSnet

PEDSnet is a large, national community of patients, families, clinicians, scientists, and healthcare system leaders who work together in a distributed learning health system (LHS) that is dedicated to discovering and implementing new ways of providing the best care and ensuring the best outcomes most efficiently. PEDSnet’s goal is to conduct research as inexpensively and quickly as possible, while engaging all stakeholders in the research process along the way.

Standardizing Care to Improve Outcomes in Pediatric Endstage Kidney Disease (SCOPE) Collaborative

The Standardizing Care to Improve Outcomes in Pediatric Endstage Kidney Disease (SCOPE) collaborative prevents infections in children and adolescents on
and
using large-scale collaboration to identify and spread effective interventions across pediatric care settings.

Organizations participating in SCOPE help families provide essential and complex care in the home for children with kidney disease. The evidence shows that patients at SCOPE centers: have reduced risk of infections, have fewer hospitalizations, maintain health for transplant, and maintain normal school and family life.

Study of the Epidemiology of Pediatric Hypertension (SUPERHERO) Registry

The The Study of the Epidemiology of Pediatric Hypertension (SUPERHERO) Registry is a multicenter retrospective cohort of youth referred to subspecialty care for hypertensive disorders. For more information, contact Andrew South (Twitter).

Worldwide Exploration of Renal Replacement Outcomes Collaborative in Kidney Disease (WE-ROCK)

Established in 2021, the Worldwide Exploration of Renal Replacement Outcomes Collaborative in Kidney Disease (WE-ROCK) is an international collaborative including over 35 centers around the world. WE-ROCK seeks to evaluate characteristics and clinical and patient centered outcomes among children receiving CKRT. Find out more on Twitter.