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ADPKD Registry

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What is ADPKD Registry?

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

Answer survey questions

Answer survey questions about your experience with ADPKD

Keep information current

Update us on your quality of life and PKD symptoms throughout the year

Participate in research

Find out about research studies for which you might qualify

Why should you join?

Collect patient perspectives

PKD patients are experts of their own disease experience. This registry is patient-powered and patient-entered. You will answer questions about your own health and the impact PKD has had on your life. These data help 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. With your help, we can collect information in a standardized format that tells us about the patient journey, unmet medical needs, patient preferences, and reveal more about the disease burden on your everyday lives and those of your families.

Advance research

There are estimated to be more than 600,000 Americans with ADPKD, but currently no nationwide resource is available to connect PKD researchers with people interested in participating in research. By joining the ADPKD Patient Registry, you enable us to help identify studies for which you may be eligible and connect you to details 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 Patient 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.

View the ADPKD Patient Registry consent form. (En Español)

What should I expect once I log in?

When you log-in, modules will be featured on your home page to ask about your experiences with PKD. To ensure your privacy, your name will be separated from your answers before they are shared with researchers.

Core questionnaire

Core questionnaire

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

Pain and Discomfort Scale

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

Vascular Outcomes

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

Family history

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. Click here for a chart to see what kind of questions we’ll be asking.
Diet and lifestyle

Diet and lifestyle

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)
Health care access and utilization

Health care access and utilization

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

COVID-19 Impact

COVID-19 Impact

This module asks you about your experience so far in the COVID-19 pandemic and should take 5–15 minutes. We’ll ask about COVID-19 test results (if applicable), assistance applied for in the last six months, and how your medical care has changed due to COVID-19 challenges.
Impact scale

Impact scale

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

Experience with liver cysts

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

Research findings

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 this registry about?

The purpose of the ADPKD Registry is to create a patient network of individuals with autosomal dominant polycystic kidney disease (ADPKD). You are asked to answer surveys online that can inform new research to improve ADPKD patient outcomes and quality of life, learn more about the patient journey, and discover unmet medical needs. ADPKD Registry keeps information in one place making it easier for researchers to utilize Registry information while protecting the privacy of those who take part.

Am I eligible to enroll?
United States 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 at 202.476.6439, or
  • Research Coordinator: Jasmine Jaber at 202.476.2838, jjaber@childrensnational.org, or
  • Research Coordinator: Elena Gibson at 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 this 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.
How long will I be in the Registry?
If you decide to join this Registry, your participation will last as long as the Registry is active or until you decide to withdraw from the Registry.
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
How is the data collected?
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.

Do I need to come in for study visits?
No, this is not a treatment study. You will be asked questions about your treatment, but no in-person visit is necessary. All information is 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.

 

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. 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 Patient 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 towards new treatments and a cure. Researchers will never contact you directly. The ADPKD Patient 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 Patient 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 my answers to the survey questions?
We’re using a specific platform that separates all identifying data and stores it in a secure place. Only PKDF Registry staff can access it 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 answers to our surveys.
What if I’m already enrolled in a local registry or clinical study?
You may participate in more than one registry. The ADPKD Registry is unique in that patients (not clinicians) are asked to provide their medical information directly, and answer questions about quality of life and the disease experience. We want to hear directly from you!

The ADPKD Registry may explore and pursue opportunities to coordinate efforts with other studies and databases. If that happens, you will be asked to provide specific permission to do so.

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.