ARPKD/HRFD Database
Contact
Description
CHOP has established a research database of data and biological samples of people who have autosomal polycystic kidney disease (ARPKD) or another hepato/renal fibrocystic disease (HRFD). The purpose is to try to learn more about the causes of these diseases. We will collect data from participants' medical records to contribute to the database. Optional blood/saliva or tissue sample may also be collected. Visit arpkdb.org to download the consent or call the CHOP Research Coordinator, Jasmine Jaber at jaberj2@chop.edu.
Eligibility and criteria
What to expect
Clinical Database - after a participant consents, the research coordinator will input the information from the participant's electronic medical health record into the database.
Optional Genetic Testing - after a participant consents, the research staff will send all the materials for blood sample collection. Alternatively, the blood can be drawn in coordination with clinical visit lab studies.
Optional Tissue Repository - after a participant consents, the research staff will send all materials necessary to collect the donated tissue samples to the appropriate physicians providing care for the participant. The study can receive tissue samples (kidney and/or liver) from patients who would like to donate after a planned nephrectomy, liver biopsy or tissue from other scheduled procedures.
For additional information, please go to arpkdb.org
Related specialties
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