Polycystic Kidney DiseasesADPKDNCT04039061
ADPKD Patient Registry
An observational study of Polycystic Kidney Diseases, run by PKD Foundation at 1 site in United States.
Trial 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. Read more about this study
- Who is it for?
- Any age
- Conditions the study is for
- Polycystic Kidney Diseases
- How many people
- 3,000 participants
- Where
- 1 siteUnited States
- Study dates
- 4 Sep 2019to 4 Sep 2029
- How long will I take part?
- 10 Years
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
Study population: Anyone with ADPKD, or suspects that they have ADPKD, is welcome to participate
Who may be able to join
- Diagnosis or suspected diagnosis with autosomal dominant polycystic kidney disease (ADPKD)
Who cannot join
- caretakers, family members or friends of individuals with ADPKD
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
Vanessa Westerfield, MPH contact
United States1 site, 1 recruiting
- Recruiting
PKD Foundation
Kansas City, Missouri, 64131
Chris Chen, PhD, 816-268-8472, registry@pkdcure.org
About this study
Official title: Autosomal Dominant Polycystic Kidney Disease 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.
Read the detailed description
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
- Polycystic Kidney Diseases
- Medical subject headings
- Polycystic Kidney Diseases
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
| Study group | Role | What they receive |
|---|---|---|
| ADPKD patients | Patients with a diagnosis, or suspected diagnosis, of ADPKD |
What is being measured
The primary outcome is the main question the study is designed to answer.
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
Measured: 1 year
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted31 Jul 2019
- Study start4 Sep 2019
- Primary completion4 Sep 2029 (estimated)
- Study completion4 Sep 2029 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Polycystic Kidney DiseasesStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Other
- Enrolment
- 3,000 participants (estimated)
- Target duration
- 10 Years
Sponsor and investigators
- Lead sponsor
- PKD Foundation
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
- Investigators
- Chris Chen, PhD, Principal investigator, PKD Foundation
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT04039061
- Sponsor's protocol ID
- 120190065
- Acronym
- ADPKD
- Status last verified
- Sep 2026
- First submitted
- 29 Jul 2019
- Last updated
- 22 Sep 2026
- Results posted
- No
- Data monitoring committee
- Yes
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Undecided
Study at a glance
From the registry record, last updated by the sponsor on 22 Sep 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Autosomal Dominant Polycystic Kidney Disease Patient Registry
- ClinicalTrials.gov ID
- NCT04039061
- Acronym / sponsor ID
- ADPKD / 120190065
- Conditions
- Polycystic Kidney Diseases
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 3,000 participants (estimated)
- Lead sponsor
- PKD FoundationUniversity, hospital or other
- Study start
- 4 Sep 2019 (actual)
- Primary completion
- 4 Sep 2029 (estimated)
- Study completion
- 4 Sep 2029 (estimated)
- First posted
- 31 Jul 2019 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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
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.
Study design
- Observational model
- Cohort
- Time perspective
- Other
- Target follow-up
- 10 Years
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| ADPKD patients | – | –Patients with a diagnosis, or suspected diagnosis, of ADPKD |
Who may qualify
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
- Study population
- Anyone with ADPKD, or suspects that they have ADPKD, is welcome to participate
Key inclusion criteria (1 listed)
- Diagnosis or suspected diagnosis with autosomal dominant polycystic kidney disease (ADPKD)
Key exclusion criteria (1 listed)
- caretakers, family members or friends of individuals with ADPKD
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
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
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 22 Sep 2026.
- Individual participant dataSharing planned: Undecided
Related trials for Polycystic Kidney Diseases
Active, not recruitingObservational study
Polycystic Kidney Disease 1 (PKD1) Gene Variant Groups in Autosomal Dominant Polycystic Kidney Disease
Autosomal Dominant Polycystic Kidney Disease (ADPKD)
RecruitingPhase 3
A Study to See if Tolvaptan is Safe in Infants and Children Who at Enrollment Are 28 Days to Less Than 18 Years Old With Autosomal Recessive Polycystic Kidney Disease (ARPKD)
Autosomal Recessive Polycystic Kidney (ARPKD)
Not yet recruitingEarly Phase 1
GBP-213 in Patients With Autosomal Dominant Polycystic Kidney Disease
Autosomal Dominant Polycystic Kidney
RecruitingObservational study
Development of Non-Invasive Prenatal Diagnosis for Single Gene Disorders
Invasive PreNatal Diagnosis in a Context of Family History of Single-gene Disorders, Including, Sickle Cell Disease
RecruitingPhase 1
Safety, Tolerability and Pharmacokinetics of AZD1613 in Adults With Autosomal Dominant Polycystic Kidney Disease
Autosomal Dominant Polycystic Kidney Disease
Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Vanessa Westerfield, MPH contact
Chris Chen, PhD principal investigator
PKD Foundation
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Polycystic Kidney Diseases, run by PKD Foundation at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 1 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 22 Sep 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Chris Chen, PhD (816-268-8472, chrisc@pkdcure.org), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Number of people with polycystic kidney disease who experience health-related quality-of-life changes (time frame: 1 year). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 22 Sep 2026.