Frequently Asked Questions

Yes, there are multiple ways PKD patients and families can find support. Through our PKD Communities, people can find opportunities to learn, connect, act, and ensure no one faces PKD alone.

There are three types of communities:

• Local Communities: based on geographical location
• PKD Thrive: for young adults with PKD
• PKD Parents: for parents of children with ADPKD and ARPKD

You can also find support through our PKD Connect Peer Mentors program. PKD Connect Peer Mentors provide resources, guidance, motivation, share their own experiences with PKD, and emotional support to an individual impacted by PKD.

If you need immediate support, call our HOPE Line at (844) 753-4673. Our team is available Monday through Friday from 8 a.m. – 5 p.m. (CT) to answer your questions and direct you to resources.

Yes, there is ongoing research into polycystic kidney disease (PKD) focused on developing more effective therapies and treatments to slow disease progression, manage symptoms, and ultimately find a cure. Researchers are exploring various approaches, including targeted medications to inhibit cyst growth, gene therapy to correct genetic mutations, and innovative surgical techniques. Clinical trials are also underway to evaluate the safety and efficacy of potential treatments for PKD. These research efforts offer hope for improved outcomes and quality of life for individuals living with PKD in the future.

Several lifestyle changes can help manage PKD and promote overall health:

1. Maintain a healthy diet: Consuming a balanced diet low in sodium, saturated fats, and cholesterol can help manage blood pressure and reduce the risk of complications such as cardiovascular disease. Focus on incorporating fruits, vegetables, whole grains, lean proteins, and healthy fats into your meals.
2. Stay hydrated: Drinking an adequate amount of water can help flush toxins from your body and prevent kidney stones, a common complication of PKD. Aim to drink plenty of water throughout the day, and limit consumption of caffeinated and alcoholic beverages.
3. Manage blood pressure: High blood pressure is a common complication of PKD and can accelerate kidney damage. Work with your healthcare provider to monitor and manage your blood pressure through medication, lifestyle modifications, and regular check-ups.
4. Maintain a healthy weight: Excess weight can strain the kidneys and worsen PKD symptoms. Aim to achieve and maintain a healthy weight through a combination of regular physical activity and a nutritious diet.
5. Exercise regularly: Engaging in regular physical activity can help improve cardiovascular health, manage weight, and reduce stress. Choose activities that you enjoy and aim for at least 30 minutes of moderate-intensity exercise most days of the week.
6. Quit smoking: Smoking can worsen kidney function and increase the risk of complications associated with PKD. If you smoke, quitting can significantly improve your overall health and reduce the progression of kidney disease.
7. Manage stress: Chronic stress can negatively impact overall health and exacerbate PKD symptoms. Incorporate stress-reducing activities such as meditation, yoga, deep breathing exercises, or hobbies that you enjoy into your daily routine.

By implementing these lifestyle changes, individuals with PKD can help manage their condition, reduce the risk of complications, and improve overall quality of life. It’s important to work closely with healthcare providers to develop a personalized treatment plan that addresses individual needs and concerns.

Yes, there is a risk of passing on PKD on to your children if you have the genetic mutation associated with the condition. PKD is an inherited disorder caused by genetic mutations, and if one or both parents have PKD, there is a chance that their children may inherit the mutated gene and develop the disease. However, the severity of PKD and the likelihood of passing it on can vary depending on the specific genetic mutations involved. Genetic counseling can help assess this risk and provide guidance for individuals and families affected by PKD.

Yes, PKD can affect other organs besides the kidneys. It can lead to the development of cysts in other organs such as the liver, pancreas, spleen, and intestines. Additionally, PKD may be associated with certain cardiovascular conditions such as heart valve abnormalities and brain aneurysms. Regular monitoring and management are essential to address potential complications affecting other organs in individuals with PKD.

PKD is managed through various treatments aimed at addressing symptoms and slowing disease progression. Treatment may include lifestyle changes, medication to manage complications like high blood pressure and pain, and interventions such as cyst drainage or surgery in severe cases. Regular monitoring by healthcare professionals is crucial to tailor treatment plans and provide optimal care for individuals with PKD.

PKD can lead to several complications, including high blood pressure, kidney stones, urinary tract infections, kidney failure, cyst infections, liver cysts, brain aneurysms, and heart valve abnormalities. Prompt medical attention and proactive management are essential to address these potential complications and maintain overall health.

Currently, there is no cure for PKD. However, various treatments can help manage symptoms and slow the progression of the disease. Research efforts continue to explore potential therapies and interventions aimed at finding a cure for PKD in the future.

Yes, PKD is hereditary. It is caused by genetic mutations that are passed down from parents to their children.

5-10 minutes

This module asks about your medical history with liver cysts.

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.

5-10 minutes

This module asks you about your personal experience with PKD over the past two weeks.

Your answers will help us understand how physical, emotional, and fatigue impact your PKD.

10-15 minutes

This module asks about your experience accessing care for your PKD.

We’ll 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

5-10 minutes

This module asks about your diet and lifestyle.

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
• Your exercise habits
• Food you exclude from your diet (ex: meat, eggs, salt)

~25 minutes

This module asks about your family history of ADPKD.

It should take about 25 minutes depending on your familiarity with your family’s experience with PKD.

5-15 minutes

This module asks about your experience with brain, chest, or abdominal aneurysms.

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.

5-10 minutes

This module asks about your experience with pain over the past seven days.

Your answers help us understand your PKD pains.

Note: If you are a transplant patient and have had your PKD kidneys removed, this survey may not apply to you.

10-15 minutes

This module asks about your personal medical history.

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).

Search by keyword or select a topic to access reports, read articles, and watch webinars on ARPKD, ADPKD, and more.

Resource page

Discover more about PKD Foundation Centers of Excellence and download information you can share with your care team.

• Diagnosis
• Related health complications
• Symptoms
• Causes

• Diagnosis
• Related health complications
• Stages
• Symptoms
• Causes
• Treatment

• Kidney 101
• Parents of children with PKD
• What are cysts?

PKD Centers of Excellence provide comprehensive, multidisciplinary clinical service for families affected by PKD in the United States. Services are centered around an organized PKD clinic in which an individual’s clinical care needs are defined, plans are made to fulfill those needs, and follow-up is provided to continuously optimize clinical management.

Clinicians in the COE Network have access to an exclusive resource page that includes peer-to-peer education, continuing medical education opportunities, and more. We also host quarterly virtual meetings for clinic directors, offering clinicians nationwide the opportunity to connect with peers, share insights, and engage in valuable mentorship opportunities within the COE Program.

Progress Reports

Designation as an PKD Center of Excellence, Pediatric Center of Excellence, Pediatric Clinic, or Partner Clinic is valid for three years. Designation as a Pediatric Clinic is valid for one year. Clinics do not have to reapply each year unless changes occur in their clinic director or other relevant members of the care team. To maintain designation, current Clinics must complete an annual progress report to the PKD Foundation.

In any year in which an unsatisfactory progress report is submitted or upon failure to deliver the services or adhere to the terms and conditions delineated in the letter of designation, the PKD Foundation reserves the right to suspend the Center of Excellence designation and any applicable grant funding until such time as identified deficiencies have been satisfactorily addressed. Said deficiencies must be resolved within 120 days of suspension or the PKD Center of Excellence designation will be revoked.

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• Nephrology
• Radiology
• Hepatology
• Genetics
• Pain
• Patient navigator services, as well as others

Learn more

• Multiple experienced ADPKD nephrologists (nurse practitioners, physicians assistants, and advanced practice providers may also be considered)
• Trained in tolvaptan Risk Evaluation and Mitigation Strategy (REMS) program with experience managing patients on the therapy
• Access to core care team members onsite/on campus as listed above in “COE Care Team Expectations”
• Workflow in place for measurement of total kidney volume by institutional radiology provider(s)
• Participation in clinical research for ADPKD

Learn more

We are committed to providing resources for medical professionals to educate and empower their patients with PKD to manage and improve their health. To provide medical professionals with in-depth information about various aspects of PKD, we have teamed up with UpToDate, an evidence based, peer reviewed online information resource.

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The PKD Foundation engages with the research community in several ways.

• Through our researcher newsletter, researchers can opt-in to receive notifications about funding opportunities (funding from the PKD Foundation and external partners), educational opportunities, events, ongoing research, and more.
• For researchers seeking participants for clinical trials, studies can be submitted to us for consideration and promotion through our ACT Alerts program.
• Through the PKD Outcomes Consortium (PKDOC), the PKD Foundation collaborates with the Critical Path Institute, representatives of the pharmaceutical industry, PKD clinicians, and the U.S. Food and Drug Administration (FDA). Together, they facilitate clinical trial development for PKD therapies by establishing a clear regulatory pathway for the pharmaceutical industry to evaluate the effectiveness of potential treatments.

Learn all about our research efforts here.

In 2022, we awarded new research funding to 11 outstanding PKD researchers. In 2023, we’ve increased that number to 13! The goal of the Research Grant and Fellowship Programs is to fund critical research to increase understanding of the genetic and pathological processes involved in PKD and to accelerate the development of potential therapies for PKD patients.

Learn more

Since the Foundation’s establishment in 1982, it has invested nearly $60 million in dedicated PKD research, clinical and scientific grant awards, fellowships, and scientific meetings. The Foundation’s financial commitment over the years has seen results on a local, national, and even global level, including initiating funding for young investigators from around the world, supporting innovative research ideas, and providing seed funding to allow researchers worldwide to apply for larger National Institutes of Health and Department of Defense grants.

Our research team has also led the launch of the nation’s largest patient-powered ADPKD Registry and brings together multiple research stakeholders in the PKD Outcomes Consortium. In 2022, the Foundation launched the Centers of Excellence in ADPKD program, to ensure access to specialized care and accelerate the translation of research studies to the clinic.

Together, these programs form a research continuum that spans from pre-clinical basic science to clinical trials to translational efforts to maximize efforts toward our goal to end PKD.

From resources to research, we’ve consolidated years of information so you can easily find the information and answers you need.

View our Resources.

Download a flyer for more information and to learn how to participate in the online database.

Learn more about the Centers of Excellence Program.

You can find additional resources by visiting our resource library.

Get the latest information on treating PKD with UpToDate.

To send a check to the PKD Foundation, please make the check payable to “PKD Foundation” and mail it to:

PKD Foundation
1001 E. 101st Terrace, Suite 220
Kansas City, MO 64131

We provide regular updates and communications to our donors, keeping you informed about the latest advancements in PKD research, patient stories, and how your support is making a difference. You can also visit our website and follow us on social media for ongoing updates and opportunities to engage with our community.

Yes. In addition to financial contributions, you can support the PKD Foundation by volunteering your time, participating in fundraising events, advocating for kidney health legislation, and spreading the word about our mission within your community and online networks.

Absolutely. Many donors choose to make their contribution in honor or memory of a friend or family member impacted by PKD. Your donation can serve as a meaningful tribute while also supporting our efforts to improve the lives of those affected by this disease. Through an online donation, you can even have an email sent to your loved one letting them know you’ve made a gift in their name.

We are committed to ensuring that the maximum amount of your donation directly supports research initiatives and patient support services. Our organization operates with transparency and accountability, allocating funds responsibly to advance our mission effectively.

While there is currently no cure for PKD, ongoing research is making significant strides toward finding effective treatments and ultimately a cure. Your contribution plays a vital role in accelerating this progress.

Your donation fuels critical research efforts aimed at understanding the underlying mechanisms of PKD, developing effective treatments, and ultimately finding a cure. Additionally, your support enables us to provide essential resources and support services to individuals and families affected by PKD.

• Improving the lives of patients with ADPKD and their families through patient-centered care.
• Encouraging disease-specific management strategies.
• Identifying and recognizing gaps in clinical care to improve ADPKD outcomes.
• Providing comprehensive, multidisciplinary clinical services.
• Developing and maintaining mentoring relationships between recognized PKD experts and less experienced nephrologists and community specialists.
• Improving health equity across communities and the nation.
• Increasing awareness of ADPKD and forming relationships with patient communities.
• Advancing research.

While improving lives today, the Centers of Excellence will drive research advancements and quality care by:

• Increasing research opportunities, collaboration, mentorships, communication, and education.
• Leveraging collective resources to accelerate translational research (turning scientific discoveries into new treatments).

If there is not a Center of Excellence near you, please share this document with your nephrologist. We accept applications on a yearly basis.

A Center of Excellence will offer diagnostic and therapeutic services with identified staff responsible for most services in each of the following disciplines:

Core specialists may include:

• Nephrology
• Radiology
• Nutrition
• Hepatology
• Genetics
• Pain management
• Patient navigation services

Non-core specialists may include:

• Pediatric nephrologists
• Kidney nutritionists/dieticians
• Urologists
• Cardiologists
• Liver surgeons
• Neurosurgeons/neurologists
• Obstetricians (high-risk pregnancy specialization)
• Psychologists/psychiatrists
• Social workers
• Transplant surgeons

Centers of Excellence provide comprehensive, multidisciplinary clinical services for families affected by ADPKD. Services are coordinated through the center to define an individual’s clinical care needs. Plans are then made to fulfill those needs, and follow-up is provided to continually optimize clinical management. Patient navigator(s) provide the first point of contact and coordinate your care.

Providers are categorized as Centers of Excellence or Partner Clinics based on the level of services offered.

Centers of Excellence provide the broadest range of services and expertise.

Partner Clinics include, at a minimum, a nephrologist interested in specialized management of ADPKD. Partner Clinics are part of the overall mentorship and educational network.

Pediatric Clinics include, at a minimum, a pediatric nephrologist with experience in the specialized management of PKD in children.

The selection process is rigorous, based on requirements established by the PKD Foundation. After institutions apply, they’re reviewed by a PKD Foundation expert panel, including clinician and patient stakeholders.

There is no information to support limiting physical activity in any child simply because they have ADPKD. It’s possible that children with large kidneys and/or large cysts may have more episodes of blood in the urine if they play contact sports such as football. However, each child should be evaluated by a doctor on an individual basis.

In general, most sports don’t affect kidney function. With the unique nature of PKD, where kidneys are enlarged and cysts can rupture, there are some simple precautions to take and issues to consider. Contact sports where the kidneys may be traumatized (flank/side or lower back impact) should either be avoided or protective pads should be worn. Examples of these types of sports include football, rugby, basketball, hockey, and particularly boxing or kickboxing. Horseback riding and cross-country biking are other sports with repetitive impact that could potentially cause issues with your kidneys. There’s no evidence that these activities worsen renal function, but they can result in pain and/or blood appearing in the urine.

There is no one best kind of exercise. The key is to find an activity that is comfortable for you and you enjoy doing. Generally, PKD patients can do any activity they want unless they get blood in the urine or it causes back, flank, or abdominal pain. The exercises that are least jarring to the kidneys include walking, swimming, and biking.

Be sure to talk with your doctor before starting an exercise regimen, as they may have guidance about what will be most effective for you or what to avoid. Remember, always stay well hydrated when exercising, and do your best to be active on a regular basis.

There are numerous resources available for individuals living with PKD, including support groups, educational materials, online forums, and organizations such as the PKD Foundation. Through our website, you’ll find educational blogs, webinars, and more to help you better understand PKD. Our local PKD Communities, PKD Connect Peer Mentors, and HOPE Line can connect you with others who understand your experience and provide valuable support and encouragement.

Yes, many individuals with PKD can still have children. However, it’s essential to discuss family planning with your healthcare provider, as there may be genetic implications to consider. Genetic counseling can provide valuable information about the risk of passing PKD to future generations and options for family planning.

While there are no specific dietary restrictions for PKD, it’s generally recommended to follow a balanced diet low in sodium and high in fruits, vegetables, and whole grains. Limiting caffeine and protein intake may also be beneficial in managing certain symptoms.

Pain management strategies for PKD may include over-the-counter or prescription pain medications, heat therapy, gentle exercise, relaxation techniques, and in some cases, procedures such as cyst drainage or surgery to reduce cyst size and alleviate discomfort.

Common symptoms of PKD include abdominal or flank pain, high blood pressure, blood in the urine, frequent urinary tract infections, kidney stones, and kidney enlargement. However, it’s important to note that some individuals may experience no symptoms, especially in the early stages of the disease.

Yes, while PKD primarily affects the kidneys, it can also impact other organs, such as the liver, pancreas, and blood vessels. It’s essential to work closely with your healthcare provider to monitor any potential complications and manage them promptly.

It’s essential to have regular monitoring of your kidney function, typically through blood tests and urine tests. Your healthcare provider will determine the frequency of these tests based on your individual health status and the progression of your PKD.

Adopting a healthy lifestyle is crucial in managing PKD. This includes maintaining a balanced diet low in sodium, staying hydrated, exercising regularly, avoiding smoking and excessive alcohol consumption, managing stress, and getting regular check-ups with your healthcare provider.

For questions regarding your company’s program policies, please contact your employer’s HR department. Much of the necessary information is also available on your company intranet.

For questions about obtaining a tax receipt or submitting and verifying a matching gift request or a volunteer grant, please email us.

We partner with a company called Double the Donation. If you see anything that should be changed, please email Double the Donation’s team.

Absolutely! Matching gifts are a great opportunity to boost participants’ fundraising totals.

It’s still possible that your employer will match your donation, even if you don’t find your company on our list. Check with your company’s HR manager and ask if your donation can be matched.

Volunteer grant programs (also referred to as volunteer matching programs or “Dollars for Doers”) are corporate giving programs in which companies provide monetary donations to organizations where employees volunteer regularly.

For example, if you volunteered as a team captain and spent time raising awareness and funds for the Walk for PKD, your employer may donate cash for that volunteer time.

Each company has specific guidelines for its volunteer grant programs. Use the search tool to see if your company offers this benefit and to find everything you need to submit your volunteer time.

Contact your company’s HR department for more information. If you already volunteer with us, it’s an easy way to provide us with additional financial support.

Yes! It’s not too late to apply for a matching gift. Many companies allow employees to submit match requests up to one year following the date of the donation.

Requesting a matching gift is normally a five-minute process that you, the donor, must initiate. You can do this by filling out and submitting a paper form provided by your employer or through an electronic submission process.

There are typically three steps:

1. Donate
   Make your donation and save your tax receipt. Many matching programs will allow for up to one year after you’ve made your donation to request a corporate match.
2. Search
   Using the search tool, find out if your company offers a matching gift program and review the guidelines. No results? Contact your HR department directly to ask if they offer a matching gift program.
3. Match
   There are two common ways to submit a matching gift request:
   • Click on the company’s intranet link provided in the search results, log in, and submit your request electronically.
   • Download your company’s matching gift verification form using the link provided in the search results. Print it, fill it out, and send it to us. We’ll take care of the rest!

   


Employee matching gift programs are corporate giving programs.

For example, let’s say your company’s matching gift policy has a minimum gift requirement of $25 and matches at a 1:1 ratio. If you donate $100 to the PKD Foundation and submit your matching gift form, your company will write a check for $100. This doubles your gift for a total of $200!

Gifts from employee spouses and retirees may also qualify for a match.

Use the search tool above to see if your company will match your gift. It’s a quick and easy way to double your contribution.

Yes, there is ongoing research into polycystic kidney disease (PKD) focused on developing more effective therapies and treatments to slow disease progression, manage symptoms, and ultimately find a cure. Researchers are exploring various approaches, including targeted medications to inhibit cyst growth, gene therapy to correct genetic mutations, and innovative surgical techniques. Clinical trials are also underway to evaluate the safety and efficacy of potential treatments for PKD. These research efforts offer hope for improved outcomes and quality of life for individuals living with PKD in the future.

Several lifestyle changes can help manage PKD and promote overall health:

1. Maintain a healthy diet: Consuming a balanced diet low in sodium, saturated fats, and cholesterol can help manage blood pressure and reduce the risk of complications such as cardiovascular disease. Focus on incorporating fruits, vegetables, whole grains, lean proteins, and healthy fats into your meals.
2. Stay hydrated: Drinking an adequate amount of water can help flush toxins from your body and prevent kidney stones, a common complication of PKD. Aim to drink plenty of water throughout the day, and limit consumption of caffeinated and alcoholic beverages.
3. Manage blood pressure: High blood pressure is a common complication of PKD and can accelerate kidney damage. Work with your healthcare provider to monitor and manage your blood pressure through medication, lifestyle modifications, and regular check-ups.
4. Maintain a healthy weight: Excess weight can strain the kidneys and worsen PKD symptoms. Aim to achieve and maintain a healthy weight through a combination of regular physical activity and a nutritious diet.
5. Exercise regularly: Engaging in regular physical activity can help improve cardiovascular health, manage weight, and reduce stress. Choose activities that you enjoy and aim for at least 30 minutes of moderate-intensity exercise most days of the week.
6. Quit smoking: Smoking can worsen kidney function and increase the risk of complications associated with PKD. If you smoke, quitting can significantly improve your overall health and reduce the progression of kidney disease.
7. Manage stress: Chronic stress can negatively impact overall health and exacerbate PKD symptoms. Incorporate stress-reducing activities such as meditation, yoga, deep breathing exercises, or hobbies that you enjoy into your daily routine.

By implementing these lifestyle changes, individuals with PKD can help manage their condition, reduce the risk of complications, and improve overall quality of life. It’s important to work closely with healthcare providers to develop a personalized treatment plan that addresses individual needs and concerns.

Yes, there is a risk of passing on PKD on to your children if you have the genetic mutation associated with the condition. PKD is an inherited disorder caused by genetic mutations, and if one or both parents have PKD, there is a chance that their children may inherit the mutated gene and develop the disease. However, the severity of PKD and the likelihood of passing it on can vary depending on the specific genetic mutations involved. Genetic counseling can help assess this risk and provide guidance for individuals and families affected by PKD.

Yes, PKD can affect other organs besides the kidneys. It can lead to the development of cysts in other organs such as the liver, pancreas, spleen, and intestines. Additionally, PKD may be associated with certain cardiovascular conditions such as heart valve abnormalities and brain aneurysms. Regular monitoring and management are essential to address potential complications affecting other organs in individuals with PKD.

PKD can lead to several complications, including high blood pressure, kidney stones, urinary tract infections, kidney failure, cyst infections, liver cysts, brain aneurysms, and heart valve abnormalities. Prompt medical attention and proactive management are essential to address these potential complications and maintain overall health.

Currently, there is no cure for PKD. However, various treatments can help manage symptoms and slow the progression of the disease. Research efforts continue to explore potential therapies and interventions aimed at finding a cure for PKD in the future.

Yes, PKD is hereditary. It is caused by genetic mutations that are passed down from parents to their children.

The PKD Foundation and other reputable organizations provide reliable information and updates about PKD research, treatments, clinical trials, and patient resources. You can subscribe to our newsletters, follow us on social media, and attend educational events to stay informed and empowered in managing your PKD journey.

Sign Up for ACT Alerts

Connecting with other PKD patients and support groups can provide valuable emotional support, practical advice, and resources for managing the challenges of living with PKD. The PKD Foundation has local communities across the country where you can find support and education from those who understand what you’re going through. We also have two virtual communities specifically for young adults with PKD and for parents with children with PKD. Additionally, our PKD Connect Peer Mentors can provide you resources, guidance, motivation, and emotional support.

About Our Communities

Yes, PKD is a genetic disorder and can be passed down from parent to child. If you have PKD, there is a chance that your children may inherit the condition. Genetic counseling can provide valuable information about the risk of passing PKD to future generations and options for family planning.

Yes, there are ongoing clinical trials and research studies investigating potential treatments and therapies for PKD. Our Accelerating Clinical Trials (ACT) Alerts can help keep you updated by email about ongoing ADPKD and ARPKD studies seeking participants.

Sign Up for ACT Alerts

Managing PKD involves adopting a healthy lifestyle, including regular exercise, maintaining a balanced diet (low in sodium and high in fruits and vegetables), staying hydrated, avoiding smoking and excessive alcohol consumption, and managing stress. It’s also important to work closely with your healthcare team to monitor your kidney function and address any complications promptly.

While there is currently no cure for PKD, treatments focus on managing symptoms and complications to improve quality of life. This may include medications to control blood pressure, pain management techniques, dietary changes, delay cyst growth, and in some cases, surgical interventions such as cyst drainage or kidney transplantation.

PKD is often diagnosed through imaging tests, such as an ultrasound, MRI, or CT scans, which can detect the presence of cysts in the kidneys. Genetic testing may also be conducted to confirm a diagnosis, especially in cases where there is a family history of PKD.

Common symptoms of PKD include abdominal or flank pain, high blood pressure, blood in the urine, frequent urinary tract infections, kidney stones, and kidney enlargement. However, symptoms can vary greatly person to person.

The PKD Foundation regularly updates participants on research findings, clinical trials, and other relevant developments through newsletters, emails, and educational materials. You can also visit the PKD Foundation’s website or contact them directly for more information about ongoing research projects and how you can get involved.

Yes, participation in the Registry is entirely voluntary. You can choose to withdraw at any time without any obligation. Simply contact the PKD Foundation to request withdrawal and your information will be promptly removed from the Registry.

By joining the ADPKD Registry, you become part of a community dedicated to advancing PKD research and improving patient care. You gain access to the latest information we’re learning in the Registry and valuable resources, like the Personal Impact Calendar and Care Summary, that you can share with your healthcare team to inform your care plan.

Additionally, you may have the opportunity to participate in clinical trials and research studies, potentially accessing cutting-edge treatments and contributing to the development of new therapies.

Yes, protecting the privacy and confidentiality of Registry participants is of utmost importance. The PKD Foundation adheres to strict privacy protocols and guidelines to ensure that all information collected is securely stored and only accessible to authorized personnel for research purposes.

The Registry collects a wide range of information, including demographic data, medical history, PKD symptoms, genetic information (if available), and details about past and current treatments. This information helps researchers gain insights into the disease’s progression, treatment outcomes, and potential risk factors.

It’s secure and easy to participate in the ADPKD Registry. After visiting the PKD Foundation’s website, joining the 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.

U.S. residents of all ages with a diagnosis of autosomal dominant polycystic kidney disease (ADPKD) are invited to join the Registry. Patients under the age of 18 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’re welcome to join and will need to agree to notify Registry staff of your diagnosis if/when it becomes available.

The ADPKD Registry is a collection of individuals with autosomal dominant polycystic kidney disease (ADPKD). The purpose of the Registry is to create a patient network that includes at least 5,000 people with 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 participating.