NCT04039061

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.

Trial Health

77
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
3,000

participants targeted

Target at P75+ for all trials

Timeline
41mo left

Started Sep 2019

Longer than P75 for all trials

Geographic Reach
1 country

1 active site

Status
recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Progress67%
Sep 2019Sep 2029

First Submitted

Initial submission to the registry

July 29, 2019

Completed
2 days until next milestone

First Posted

Study publicly available on registry

July 31, 2019

Completed
1 month until next milestone

Study Start

First participant enrolled

September 4, 2019

Completed
10 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

September 4, 2029

Expected
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

September 4, 2029

Last Updated

November 18, 2023

Status Verified

November 1, 2023

Enrollment Period

10 years

First QC Date

July 29, 2019

Last Update Submit

November 15, 2023

Conditions

Polycystic Kidney Diseases

Outcome Measures

Primary Outcomes (1)

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

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

    1 year

Study Arms (1)

ADPKD patients

Patients with a diagnosis, or suspected diagnosis, of ADPKD

Eligibility Criteria

Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

Anyone with ADPKD, or suspects that they have ADPKD, is welcome to participate

You may qualify if:

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

You may not qualify if:

  • caretakers, family members or friends of individuals with ADPKD

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

PKD Foundation

Kansas City, Missouri, 64131, United States

RECRUITING

MeSH Terms

Conditions

Polycystic Kidney Diseases

Condition Hierarchy (Ancestors)

Kidney Diseases, CysticKidney DiseasesUrologic DiseasesFemale Urogenital DiseasesFemale Urogenital Diseases and Pregnancy ComplicationsUrogenital DiseasesMale Urogenital DiseasesAbnormalities, MultipleCongenital AbnormalitiesCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesCiliopathiesGenetic Diseases, Inborn

Study Officials

  • Chris Rusconi, PhD

    PKD Foundation

    PRINCIPAL INVESTIGATOR

Central Study Contacts

Elise Hoover

CONTACT

816-268-8478eliseh@pkdcure.org

Registry staff

CONTACT

registry@pkdcure.org

Study Design

Study Type
observational
Observational Model
COHORT
Time Perspective
OTHER
Target Duration
10 Years
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

July 29, 2019

First Posted

July 31, 2019

Study Start

September 4, 2019

Primary Completion (Estimated)

September 4, 2029

Study Completion (Estimated)

September 4, 2029

Last Updated

November 18, 2023

Record last verified: 2023-11

Locations

US(1)