ADPKD Patient Registry

Conditions

• Polycystic Kidney Diseases

Eligibility Criteria

Sex

ALL

Age

N/A - N/A

Healthy Volunteers

Not accepted

Study Details

The purpose of the ADPKD Registry is to create an online patient network that includes at least 5,000 people with Autosomal Dominant Polycystic Kidney Disease (ADPKD) who contribute data on their health and other topics. The ADPKD Patient Registry aims to support important scientific discoveries and support patient needs in the following ways: * Connect ADPKD patients with opportunities to join clinical studies. * Collect data for the research community to better describe the ADPKD disease experience and improve patient care. * Engage with patients by measuring quality of life outcomes.

Key Dates

Start date

Sep 4, 2019

Status verified

Nov 2023

Primary completion

Sep 4, 2029

Completion

Sep 4, 2029

Study Design

Enrollment

3,000 participants (estimated)

Arms

• Arm: ADPKD patients
  Patients with a diagnosis, or suspected diagnosis, of ADPKD

Primary Outcome Measure

Number of people with polycystic kidney disease who experience health-related quality-of-life changes [ Time Frame: 1 year ]

Central Contacts

• Elise Hoover
  816-268-8478
  [email protected]
• Registry staff
  [email protected]

Locations (1)

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