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Polycystic kidney disease

Polycystic kidney disease (PKD) is an irreversible inherited disease that causes chronic kidney disease (CKD) and permanent worsening in kidney function.

Patients with PKD are different than others with CKD. They have special characteristics that require attention when thinking about questions and defining studies including that they are typically younger when diagnoses, have less co-morbidities, and are active in the work force.

PKD occurs in all races and is the cause of kidney failure in approximately 5% of patients who initiate dialysis annually in the United States.

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Our Mission

We aim to establish patient centered outcomes that are based on the shared priorities of patients with ADPKD, their families, healthcare providers, researchers and other stakeholders.

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Our work

Focus groups with patients, researchers, and clinical experts are held to discuss PKD impact, healthcare outcomes that are important to patients, insurability, and patients activation and engagement.

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Our Partners

Our project “setting community ­driven priorities about Polycystic Kidney Disease care: Establishing a multi­ stakeholder engagement team” has been extremely successful in engaging different stakeholders. We have established the advisory board which includes researchers, scientists, patients, and other stakeholders. We have representation from the University of Kansas Medical Center, the Center for Practical Bioethics, Tufts Medical Center, the Polycystic Kidney Disease (PKD) Foundation, Standardized Outcomes in Nephrology (SONG)­PKD initiative, and industry. We also have patients and caregivers, research and clinical care coordinators, and patient advocates represented on the advisory board.

70+

patients and caregivers

7 different focus groups

10+

Clinical and research experts

1 focus group

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Outcomes

Kidney Health

Lifestyle

Comorbidities

Psychological impact

Family and awareness

Mortality

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What lies behind us and what lies before us are tiny matters compared to what lies within us

Ralph Waldo Emerson