Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
3000 participants
OBSERVATIONAL
2019-09-04
2029-09-04
Brief Summary
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* 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.
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Detailed Description
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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.
Conditions
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Study Design
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COHORT
OTHER
Study Groups
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ADPKD patients
Patients with a diagnosis, or suspected diagnosis, of ADPKD
No interventions assigned to this group
Eligibility Criteria
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Inclusion Criteria
Exclusion Criteria
ALL
No
Sponsors
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PKD Foundation
OTHER
Responsible Party
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Principal Investigators
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Chris Rusconi, PhD
Role: PRINCIPAL_INVESTIGATOR
PKD Foundation
Locations
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PKD Foundation
Kansas City, Missouri, United States
Countries
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Central Contacts
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Facility Contacts
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Other Identifiers
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120190065
Identifier Type: -
Identifier Source: org_study_id
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