A patient registry is available for people with autosomal dominant polycystic kidney disease (ADPKD). The registry is a way to empower patients within a research community while providing information about the impact of ADPKD on the lives of those affected. Participants will be asked to provide information about their diagnosis, symptoms, family history and more. Researchers will connect registry volunteers with studies and clinical trials they may be eligible to participate in. The hope is that registry participation will contribute towards the goal of curing ADPKD.
ADPKD is a genetic disorder—affecting approximately 400,000 people in the US—where cysts form in the kidneys. Symptoms include side and back pain, and headaches, urinary tract infections, abnormal heart valves, high blood pressure, kidney stones, brain aneurysms, and diverticulosis.