ADPKD Patient Registry

NCT ID: NCT04039061

Last Updated: 2023-11-18

Study Results

Results pending

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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Recruitment Status

RECRUITING

Total Enrollment

3000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2019-09-04

Study Completion Date

2029-09-04

Brief Summary

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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.

Detailed Description

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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.

Conditions

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Polycystic Kidney Diseases

Study Design

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Observational Model Type

COHORT

Study Time Perspective

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

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

Exclusion Criteria

* caretakers, family members or friends of individuals with ADPKD
Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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PKD Foundation

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

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

Site Status RECRUITING

Countries

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United States

Central Contacts

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Elise Hoover

Role: CONTACT

816-268-8478

Registry staff

Role: CONTACT

Facility Contacts

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Elise Hoover

Role: primary

Other Identifiers

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120190065

Identifier Type: -

Identifier Source: org_study_id

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