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.
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.
ACT Alert
Accelerating Clinical Trials
Thank you for your interest in ARPKD research! To receive information about clinical trials related to ARPKD, please fill out the form below.
Thank you for your interest in ARPKD research! To receive information about clinical trials related to ARPKD, please fill out the form below.