Plain-English translation of NCT01401998 on ClinicalTrials.gov ↗ · Source last updated · Translation generated · How we translate trials
This is a research study that builds a central database of medical information from patients with rare kidney and liver diseases, including autosomal recessive polycystic kidney disease and related conditions. Researchers at Children's Hospital of Philadelphia will collect and organize your medical records, lab results, and doctor's notes to help understand these diseases better. If you choose, you can also donate blood samples (from you and your parents) so scientists can study the genetic causes of these conditions.
Very little is known about these rare kidney and liver diseases, and patients are scattered across many different hospitals and doctors. By gathering medical information and genetic material in one place, researchers hope to better understand how these diseases develop, identify patterns, and eventually create better treatments.
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You do not need to travel to the hospital for this study. The research team will ask your permission to collect your medical records, lab results, and doctor's notes, which they will enter into a secure database. If you choose the optional genetic testing, either your local doctor's office can draw a small blood sample (about a teaspoon) or the research team will mail you a blood collection kit. Your parents' blood samples are also requested if possible, or saliva can be used instead. The study team will remove your name and personal information before storing your data, and will follow up with you once a year to collect any new medical information.
AI-generated summary from trial data · Jun 5, 2026 · Not medical advice
United States