ADPKD Patient Registry

Description

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.

Conditions

Polycystic Kidney Diseases

Study Overview

Study Details

Study overview

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.

Autosomal Dominant Polycystic Kidney Disease Patient Registry

ADPKD Patient Registry

Condition
Polycystic Kidney Diseases
Intervention / Treatment

-

Contacts and Locations

Kansas City

PKD Foundation, Kansas City, Missouri, United States, 64131

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • * Diagnosis or suspected diagnosis with autosomal dominant polycystic kidney disease (ADPKD)
  • * caretakers, family members or friends of individuals with ADPKD

Ages Eligible for Study

to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

PKD Foundation,

Chris Rusconi, PhD, PRINCIPAL_INVESTIGATOR, PKD Foundation

Study Record Dates

2029-09-04