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ADPKD Patient Registry (ADPKD)

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details. Identifier: NCT04039061
Recruitment Status : Recruiting
First Posted : July 31, 2019
Last Update Posted : September 9, 2019
Information provided by (Responsible Party):
PKD Foundation

Brief Summary:

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.

Condition or disease
Polycystic Kidney Diseases

Detailed Description:

The ADPKD Registry will be a patient-powered network of people with ADPKD. This data will inform new research to improve ADPKD patient outcomes, learn more about the patient journey and discover unmet medical needs. We collect data most relevant to your ADPKD diagnosis, its major symptoms and management, as well as key demographic data (no personally identifiable information is shared). A Registry keeps information in one place making it easier for researchers to utilize Registry information while still protecting the privacy of those who take part. The Registry will be hosted on a secure, online platform that patients can access using their home computers, tablets or phones.

The purpose of the ADPKD Registry is to allow PKD patients to:

  • Connect with researchers and express interest in taking part in certain clinical studies for ADPKD, including studies of new medications and other treatments.
  • Take confidential health-related surveys. These surveys are aimed at better understanding of the health of people with PKD across their lifespans.

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Study Type : Observational [Patient Registry]
Estimated Enrollment : 3000 participants
Observational Model: Cohort
Time Perspective: Other
Target Follow-Up Duration: 10 Years
Official Title: Autosomal Dominant Polycystic Kidney Disease Patient Registry
Actual Study Start Date : September 4, 2019
Estimated Primary Completion Date : September 4, 2029
Estimated Study Completion Date : September 4, 2029

Resource links provided by the National Library of Medicine

MedlinePlus related topics: Kidney Diseases

ADPKD patients
Patients with a diagnosis, or suspected diagnosis, of ADPKD

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

Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.

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Ages Eligible for Study:   Child, Adult, Older Adult
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Anyone with ADPKD, or suspects that they have ADPKD, is welcome to participate

Inclusion Criteria:

  • Diagnosis or suspected diagnosis with autosomal dominant polycystic kidney disease (ADPKD)

Exclusion Criteria:

  • caretakers, family members or friends of individuals with ADPKD

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT04039061

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Contact: Elise Hoover 816-268-8478
Contact: Registry staff

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United States, Missouri
PKD Foundation Recruiting
Kansas City, Missouri, United States, 64131
Contact: Elise Hoover   
Sponsors and Collaborators
PKD Foundation
Additional Information:
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Responsible Party: PKD Foundation Identifier: NCT04039061    
Other Study ID Numbers: 120190065
First Posted: July 31, 2019    Key Record Dates
Last Update Posted: September 9, 2019
Last Verified: September 2019
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: Undecided

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Studies a U.S. FDA-regulated Drug Product: No
Studies a U.S. FDA-regulated Device Product: No
Additional relevant MeSH terms:
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Kidney Diseases
Polycystic Kidney Diseases
Urologic Diseases
Kidney Diseases, Cystic
Abnormalities, Multiple
Congenital Abnormalities
Genetic Diseases, Inborn