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Why join?
What to expect
Research findings
FAQs

What is ADPKD Registry?

The ADPKD Registry is a collection of individuals with autosomal dominant polycystic kidney disease (ADPKD).

Participants…
Answer survey questions

Answer questions about your experience with ADPKD

Keep information current

Update us on symptoms and quality of life
throughout the year

Take part in research

Find out about research studies for which
you might qualify

Share health records

Share clinical data by linking your provider
health records.

We’re breaking ground with electronic health records.

There’s a new way ADPKD Registry participants can step up to provide hope
today, and for future generations. The nation’s first dedicated ADPKD Registry is
now also one of the first patient registries of any kind to integrate patient-
provided health records. Share your health records through your provider’s online
portal with a few simple steps on the ADPKD Registry. This voluntary option
provides researchers with more and better data to help end PKD. Your privacy is
carefully protected, and the process is seamless and secure. You’ll also receive
an Enhanced Care Summary to share with your doctors.
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Why should you join?

Your experience is vital

PKD patients are experts of their own disease experience. This Registry is patient-powered and patient-directed. By answering questions about your health and linking your provider health records, if you choose to do so, you’re helping us create a key resource for researchers to better develop outcomes that reflect patient perspectives.

Power in numbers

The Registry is the first North American database of patients with ADPKD and one of the first registries to integrate provider health records. With your help, we can collect important clinical data and learn about the patient journey, including unmet medical needs, patient preferences and the disease burden on your life and your family’s life.

Advance research

There are estimated to be more than 600,000 Americans with ADPKD, but never before has a nationwide resource connected PKD researchers with people interested in participating in research. By joining the ADPKD Registry, you enable us to identify studies you may be eligible for and share information on how to participate.

It’s secure and easy to participate

The Registry is hosted on a secure platform that follows comprehensive measures to protect your information. Joining the ADPKD Registry involves three steps:

  1. Create an online account
  2. Agree to an informed consent
  3. Complete the core questionnaire

This can all be done online and from the comfort of your own home on your computer, tablet or mobile phone.

What should I expect once I log in?

When you log in, modules will be featured on your homepage to ask about your experiences with PKD. You can also link your health records through your provider’s online portal by clicking on “My Care Network.” Our third-party partner, 1UpHealth, ensures data security. And because your name will be separated from your clinical data and questionnaire answers before they are shared with researchers, your privacy is carefully protected.

Core questionnaire

Your medical history. 10-15 minutes. 

This module asks about your personal medical history and will take about 10–15 minutes to complete. Please make sure you know your:

  • Most recent kidney function lab values (creatinine and eGFR).
  • Year of diagnosis
  • Name of your physician and medical center
  • Month and year you began medication for high blood pressure (if applicable)
Pain and discomfort scale

Your experience with pain over the past seven days. 5-10 minutes. 

This module asks about your personal experience with pain over the past seven days and should take 5–10 minutes to complete. Your answers help us understand your pain (dull pain, sharp pain, and discomfort) from PKD.
If you are a transplant patient and have had your PKD kidneys removed, this survey may not apply to you.

Vascular outcomes

Your experience with brain,chest, or abdominal aneurysms. 5-15 minutes.

This module asks about your experience with brain, chest or abdominal aneurysms and could take 5-15 minutes, depending on your history

Make sure you know:

  • How your aneurysm was diagnosed or screened for (if applicable)
  • The size of your aneurysm, and treatment methods (if applicable)
  • Your family history of aneurysms
Family history

Your family history of ADPKD. up to 25 minutes. 

This module asks about your family history of ADPKD and should take up to 25 minutes, depending on your familiarity with your family’s experience with PKD. Think only of people you are related to by blood including those living or deceased. 

Diet and lifestyle

Your diet and lifestyle. 5-10 minutes. 

This module asks about your diet and lifestyle and will take about 5–10 minutes to answer. We’ll ask about:

  • Any dietary supplements you take (ex: fish oil, folic acid)
  • Alcohol and caffeine consumption (coffee, tea and soda)
  • How much water you drink on an average day
  • Exercise habits
  • Food you exclude from your diet (ex: meat, eggs, salt)
Healthcare access and utilization

Your experience accessing care for your PKD. 10-15 minutes.

This module asks about your experience accessing care for your PKD. It will take about 10-15 minutes to answer these questions. We will ask about:

    • The clinicians who manage your disease
    • The challenges you may have faced affording and accessing:
      —Medications
      —Procedures
      —Dialysis and transplant services
      —Other medical costs
ADPKD impact scale

Your experience with PKD over the past two weeks. 5-10 minutes. 

This module asks you about your personal experience with PKD over the past two weeks and will take 5–10 minutes to complete. Your answers will help us understand how physical, emotional, and fatigue impact your PKD.

Experience with liver cysts

Your medical history with liver cysts. 5-10 minutes. 

About your medical history with liver cysts (5–10 minutes)
Make sure you know:

  • How your liver cysts were discovered
  • Issues you believe to be due to liver cysts
  • Medication you’re taking for your liver cysts
MY CARE NETWORK New!

Share ongoing clinical data by linking your health records. Learn more >

Research findings

Download 2023 poster
Download 2022 poster
Download 2021 poster
Download 2020 poster

PKDF presented a poster at the American Society of Nephrology’s 2020 Kidney Week, along with members of the Patient Registry Advisory Committee.

Visit ASN
An article by PKD Foundation’s Vice President of Research Programs, Elise Hoover, was published in Kidney360 titled “Design and basic characteristics of a national patient-powered registry in ADPKD.”
Read the article
Download 2022 report
Download 2021 report
Download 2020 report
Request paper copy

FAQs

What is the Registry about?
The purpose of the ADPKD Registry is to create a 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. 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). The ADPKD Registry keeps information in one place making it easier for researchers to utilize the information while still protecting the privacy of those who take part.
What do Registry participants do?
The ADPKD Registry allows 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.
  • Provide access to health records. This data will allow analysis of trends of disease over time and other factors that might accelerate or slow progression.
Am I eligible to enroll?
U.S. residents of all ages with a diagnosis of autosomal dominant polycystic kidney disease (ADPKD) are invited to join the Registry. Patients under 18 years of age may also join with the assistance (assent) of a parent or legal guardian.

 

If you do not have an official diagnosis but have a family history and suspect that you have PKD, you are welcome to join and will need to agree to notify Registry staff of your diagnosis if/when it becomes available.

 

If you, or someone you know, has autosomal recessive polycystic kidney disease (ARPKD), our collaborators at the University of Alabama at Birmingham and Children’s National Medical Center have created a database with specific emphasis on ARPKD. If you have questions or would like to enroll yourself or your child (alive or deceased) as a part of the
ARPKD Database, please contact:

 

  • Principal Investigator Lisa Guay-Woodford, MD (202.476.6439, lguaywood@childrensnational.org) or
  • Research Coordinator Jasmine Jaber (202.476.2838, jjaber@childrensnational.org) or
  • Research Coordinator Elena Gibson (202.476.2197, egibson@childrensnational.org)
Should I join if I am post-transplant?

Yes! Your data is valuable to research regardless of whether you have had a transplant and/or no longer have your PKD kidneys.

Who is paying for the Registry?

The Registry is fully funded by the PKD Foundation and there is no charge for participation. Support for the Registry may come from individual donors, other foundations, corporations, pharmaceutical companies, or other collaborators.

Will being in the Registry help me?
You may not benefit directly from participating in the ADPKD Registry. However, the entire PKD community benefits from research advancements the Registry makes possible.

You may learn about:
  • Studies and clinical trials you’re eligible for
  • Research findings, including new discoveries
  • By taking surveys, you may learn how your answers compare to other PKD patients
  • By providing access to your health records, you will receive an Enhanced Care Summary that may inform conversations with your doctor
I have my Registry password and login information, but I can’t login. What should I do?

In August of 2023, the Registry moved to an upgraded platform. In order to protect your information, account passwords were not able to be transferred over. Therefore, your password needs to be reset. If you haven’t logged in since before last August, please select “Forgot Password” and follow the steps to be able to access the ADPKD Registry. If this does not work, please contact research@pkdcure.org.

How long will I be in the Registry?
If you decide to join the Registry, your participation will last as long as the Registry is active or until you decide to withdraw from the Registry. If you provide access to your health records, this authorization lasts for up to one year. You’ll be notified annually about reauthorizing.
What types of data are collected in the ADPKD Patient Registry?
  • Socio-demographics
  • Medical and diagnosis
  • Treatment and PKD progression
  • Management of PKD-related symptoms
  • Quality of life
What kind of data will you collect from my health records?
Providing access to your health records is optional and voluntary. Choosing to share this data with researchers through the Registry will allow us to combine and compare responses to the online surveys (about family history, quality of life, pain and others) with your clinical data to understand how disease progression looks in different people. We use a third-party partner, 1UpHealth, to ensure the process is seamless and secure. We will collect data from your health records including:
  • Details of ADPKD diagnosis and progression
  • Current medications
  • Vital signs from your clinic visits (such as blood pressure)
  • Names and specialties of your health care providers
  • Past and current related lab results (such as kidney function blood and urine tests)
  • Other potentially related health conditions

We will not collect information that is protected b y law, such as mentla health, HIV status, or history of substance abuse.

How is the data collected?
When you answer questions in the Registry, the data is collected through a secure web-based system developed by the PKD Foundation and IQVIA, a Contract Research Organization (CRO) and registry platform company dedicated to advancing clinical research—including that of patient registries. Registry participants respond to questions grouped within a series of surveys designed to collect information about ADPKD multiple times per year. You will receive email alerts from the ADPKD Registry staff when new surveys are available. You can choose to answer all, any, or none of the survey questions. Whatever data you provide helps to create a more detailed picture of the PKD disease experience.


When you provide access to your health records, you’ll be directed to your provider’s online portal while you’re logged into the Registry. Once you give consent, a third-party partner, 1UpHealth, securely collects the data for the Registry. All the data is then de-identified so it’s not tied to your name or other identifying information. 1UpHealth is a trusted industry leader in health care data management.
Do I need to come in for study visits?
No, this is not a treatment study. You will be asked questions about your treatment and have the option of providing access to your health records, but no in-person visit is necessary. All information is securely collected via the online patient portal.
Do I have to be in this Registry?
Your participation in the Registry is voluntary. The care you receive from your regular doctor will not be affected in any way, whether or not you decide to be in the Registry. You also choose to what extent you participate. You may answer all, some or none of the surveys. You may provide access to your health records, or not. You may opt in or opt out of clinical trial opportunities. Whatever data you provide helps to create a more detailed picture of the PKD disease experience. If you want to stop being in the Registry or suspend access to your provider health records, tell the PKD Foundation at research@pkdcure.org
Is my information secure?
Yes, the ADPKD Registry follows strict government guidelines to assure patient information is protected. An Investigational Review Board (IRB) has approved this Registry. All survey answers and provider health records are de-identified. Your personal information will be stored in a secure database and protected with a password. When you join, the Registry will assign you a unique numeric identifier. Only authorized people who work in the Registry will be able to connect this identifier to your name and contact information. To protect your confidentiality, we will use only secure computers and secure means of analyzing
your information.
How will I learn about clinical studies?
The ADPKD Registry will also serve as a recruitment database that can be used to connect you with leading researchers of studies that you may be eligible for. If researchers cannot find enough patients to join a study, this can delay discoveries that can benefit the ADPKD community. Your participation will help the community accelerate these discoveries and drive research toward new treatments and a cure. Researchers will never contact you directly. The Registry staff will contact you with information about a study by email or through your patient portal. It is then up to you if you want to participate or would like additional information.

 

The ADPKD Registry will also share data with researchers to speed the development of new discoveries and therapies. The information you provide will become de-identified information, and only de- identified information will be shared with researchers. Your data also helps drug developers know the size of the ADPKD population available for trials and helps identify new trial sites, increasing our community’s access to trials and potential therapies.
Who will be able to see the information I provide the Registry?

We’re using a platform that separates all identifying data and stores it in a secure place. Only authorized people who work in the Registry can access that identifying information, and it will not be shared. This information includes name, date of birth, address (we only share city and state) and contact information. When we share information for research purposes, no one is able to identify you or your family based on your health records or your answers to our surveys. If a researcher wants to access your name or other identifying information, the Registry staff will ask your permission first.

What if I’m already enrolled in a local registry or clinical study?

You may participate in more than one registry. The ADPKD Registry may coordinate efforts wtih other studies and databases. If that happens, you will be asked to provide specific permission for your information to be included.

What if I have questions?

You can ask questions about the Registry at any time. Call the PKD Foundation’s PKD Hope Line at 844.PKD.HOPE (844.753.4673). Or email registry@pkdcure.org.

How do I sign up?

Sign up online here. You’ll be asked to create an online account and agree to our consent form. Once signed up, you’ll be asked to complete a few questionnaires about your diagnosis, symptoms, and family history.