Receiving an ARPKD diagnosis can feel overwhelming and frightening, especially knowing that it can sometimes be life-threatening in the first month. However, there’s hope: nearly 80% of children with ARPKD survive the newborn stage.
While about one-third of these children may need a transplant or dialysis within the first 10 years, there’s no need to be pessimistic.
The outlook for ARPKD has improved significantly—it’s no longer considered a fatal condition. Just 20 years ago, only half the children with this disease lived to see their 10th birthday. Today, more than 90% of children who survive the newborn period reach their 20th birthday, and half of them still haven’t needed dialysis or a transplant.
The ARPKD Patient Database
The ARPKD Database is a research database for people who have autosomal polycystic kidney disease (ARPKD) or another hepato/renal fibrocystic disease (HRFD). This database is managed by the Children’s Hospital of Philadelphia and initiated by Dr. Lisa Guay-Woodford
The purpose is to try to learn more about the causes of these diseases by collecting data from participants' medical records to contribute to the database. Optional blood/saliva or tissue sample may also be collected. Contact CHOP Research Coordinator, Jasmine Jaber at jaberj2@chop.edu for more to learn more.
FAQ's
Find answers to the most commonly asked questions.
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Where can I learn more about the ARPKD patient database?
Click Here for more information and how to participate.
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How do I find up to date information on treating PKD?
Get the latest information on treating PKD with UpToDate.
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How do you notify patients when there are clinical trials in their area?
Sign up for ACT Alerts to get notified of ADPKD and ARPKD clinical studies in your area.
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