Offered by: Nemours
Location: Orlando, Fla. and Wilmington, Del.
What is the trial about?
The purpose of the study is to enter scientific data on care and treatment of pediatric renal disease and transplantation into a national computer database, the North American Pediatric Renal Transplant Cooperative Studies (NAPRTCS). Collecting this data into a nationwide registry is expected to improve medical care of children including those who have received renal transplants.
Who can participate?
Any child with chronic renal insufficiency, receiving maintenance dialysis therapy or who has received a renal transplant and who has not reached their 21st birthday may participate. Patients with a diagnosis of Cystinosis with or without chronic kidney disease, dialysis or transplant are also included.
What is involved?
This study involves collecting information for a database, including test results that are routinely obtained on children with renal disease and children who have received renal transplants. Your child’s routine medical care for their renal disease will not change as a result of participating in this study. Your child will be identified by a nine-digit identifier code.
Information collected includes date of birth, blood test results, physical symptoms, growth, donor information, complications, medications including immunosuppression and length of hospitalization. More detailed information will be collected with any episode of organ rejection or for adverse events. This information will include physical symptoms, blood test results, biopsy results and treatment. Collection of data for patients with Cystinosis will be done at entry into the study and at 6, 12, 18 and 24 months following entry or until the study is concluded, whichever comes first. In addition, if you enroll in this registry, and are taking a medication called Venofer, which is used to treat iron deficiency anemia, we will collect additional information for 12 months about this medicine.
Contact Nemours Clinical Trials
Trial Name: The Trends, Outcome and Growth of Children With Renal Disease or Renal Transplant