With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. Whether you are looking for information, resources or just a shoulder to lean on, PKD Connect gives you the support to keep hope within reach.

With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. Whether you are looking for information, resources or just a shoulder to lean on, PKD Connect gives you the support to keep hope within reach.

With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. Whether you are looking for information, resources or just a shoulder to lean on, PKD Connect gives you the support to keep hope within reach.

With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. Whether you are looking for information, resources or just a shoulder to lean on, PKD Connect gives you the support to keep hope within reach.

ADPKD Patient Registry

Launching this fall

What is it?

The ADPKD Patient Registry will be 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 will be patient-powered and patient-entered. You will answer questions about your own health and the impact PKD has had on your life. These data will help create a key resource for researchers to better develop outcomes that reflect patient perspectives.

Power in numbers

The Registry will be the first North American database of patients with ADPKD. With your help, we can collect information in a standardized format that will tell 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 will 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 will be 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.

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 will be asked to answer surveys online that will inform new research to improve ADPKD patient outcomes and quality of life, learn more about the patient journey and discover unmet medical needs. A 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?

People 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 will be 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 Patient Registry staff when new surveys are available.

You may be asked to provide copies of medical evaluation and assessments, including eGFR, Creatinine, and BUN blood tests (kidney function lab tests), imaging scans, and genetic test results to confirm your diagnosis and assess your disease progression. This is voluntary; you can choose to answer all, any or none of the survey questions and choose not to provide medical evaluations and assessments. However, the data you provide will help create a 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 will be 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 Patient 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 ways 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 will be 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 Patient 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 Patient 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?

The Registry portal will launch in the fall season of 2019. Sign up for updates here or email research@pkdcure.org with questions.