Offered by: Nemours Children's
Location: Delaware Valley
The Trends, Outcome and Growth of Children With Renal Disease or Renal Transplant
The purpose of this research study is to enter data on care and treatment of pediatric renal disease and transplantation into a national computer database, called the North American Pediatric Renal Transplant Cooperative Studies (NAPRTCS), to improve the medical care of children with these conditions.
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. Patients with a diagnosis of Cystinosis with or without chronic kidney disease, dialysis or transplant are also included.
All patients participating in NAPRTCS will have an initial evaluation and regular visits. During the evaluation and follow-up visits, information will be collected for the database, depending on the specific condition.
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.
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