North American Pediatric Renal Transplant Cooperative Study (NAPRTCS)

Study on Pediatric Kidney Transplant Data Collection

C
Corina Nailescu

Primary Investigator

Enrolling By Invitation
17 years or below
All
Phase N/A
110 participants needed
1 Location

Brief description of study

NAPRTCS works to study the clinical course and natural history of patients with renal dysfunction and continues to follow these patients as they move among the end-stage renal disease (ESRD) therapeutic modalities, and to collect and analyze information and to advance the science of pediatric renal transplant.  The purpose of this study is to enter scientific data on care and treatment of pediatric renal disease and transplantation into a national registry.
 
THIS STUDY IS ENROLLING BY INVITATION ONLY - Patients may be enrolled simultaneously in the Cystinosis Registry and the CAREDX (peripheral blood donor-derived cell-free DNA (dd-cfDNA) testing) along with CKD or Dialysis or Transplant arm of the NAPRTCS Registry. Participating Centers will report on participants with a diagnosis of Cystinosis at entry into the study and at 6, 12, 18, and 24 months following entry or until the study is concluded, whichever comes first. 

Detailed description of study

This is a prospective and retrospective cohort study that includes both incident and prevalent patients who are enrolled in the transplant arms of the NAPRTCS registry.Data collection will occur from discussion with subjects and parents and review of medical records. There will be no drugs, procedures or interventions performed solely for the purpose of this study. 
 
Data collection occurs every 6 months.

Eligibility of study

You may be eligible for this study if you meet the following criteria:

  • Conditions: Renal Insufficiency, Riley
  • Age: 17 years or below
  • Gender: All

Inclusion Criteria
  • Pediatric patients are eligible for participation in NAPRTCS.  NAPRTCS defines a pediatrics patient as a patient who will not have reached his/her 21st birthday prior to enrollment in the Cooperative Study.
  • All pediatric patients who have received a renal allograft in a participating center on or after January 1, 1987 are eligible for enrollment.
  • All pediatric patients receiving maintenance dialysis at a participating pediatric transplant center are eligible for enrollment.  
  • All pediatric patients with an estimated GFR by the Schwartz method of <75 mL/min/1.73m2 will be eligible for enrollment
  • Pre-CRI (Chronic Renal Insufficiency) patients with FSGS, or other diseases as determined by the study investigators will be eligible for enrollment
  • Cystinosis Diagnosis
  • All Pediatric transplant patients for CAREDX ((peripheral blood donor-derived cell-free DNA (dd-cfDNA) testing) arm
 

This study investigates the collection of data on pediatric kidney disease and transplants. The purpose is to gather information into a national registry to better understand the care and treatment of these conditions.

The study involves collecting data from discussions with participants and their parents, as well as reviewing medical records. No new drugs or procedures will be introduced for the study.

  • Who can participate: Pediatric patients (children and adolescents) who have received a kidney transplant from a donor at a participating center on or after January 1, 1987, can join.
  • Study details: Participants will have their medical data collected through discussions and records review.
Updated on 11 Dec 2025. Study ID: PNEPH-NOVARTIS-NAPRTCS, 1011003477
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Interested in the study?

This study is accepting only persons who receive care at a certain clinic or doctor or who are part of an invited group. Questions about this study can be directed to the study team listed in the description or contact your doctor to see if you are eligible.

Accepting Referrals by Invitation Only