Recruiting

NCT Number: NCT04039061

ADPKD Patient Registry

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.

Recruiting

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Key information

Conditions

Polycystic Kidney Diseases Abnormalities, Multiple Ciliopathies Congenital Abnormalities Congenital, Hereditary, and Neonatal Diseases and Abnormalities Female Urogenital Diseases Female Urogenital Diseases and Pregnancy Complications Genetic Diseases, Inborn Kidney Diseases Kidney Diseases, Cystic Male Urogenital Diseases Urogenital Diseases Urologic Diseases

Sex eligibility

All sexes

Study type

Observational

Primary location

PKD Foundation

Kansas City, Missouri, 64131, United States

Location status: Recruiting

Location contact

Elise Hoover

CONTACT

[email protected]

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

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

Exclusion criteria

caretakers, family members or friends of individuals with ADPKD

Treatment and study plan

Primary outcomes

Number of people with polycystic kidney disease who experience health-related quality-of-life changes

Time frame: 1 year

To be assessed with online modules, developed both internally and through validated partners

Study contacts

Contact information is provided by the study sponsor or research team.

Elise Hoover

CONTACT

[email protected]

816-268-8478

Registry staff

CONTACT

[email protected]

Sponsors and collaborators

Lead sponsor

PKD Foundation

Other

Registry information

Official study title

Autosomal Dominant Polycystic Kidney Disease Patient Registry

Acronym: ADPKD

Important dates

Study start: 2019
Primary completion: 2029
Study completion: 2029
First posted: Jul 31, 2019
Registry last updated: Nov 18, 2023

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Recruiting