Where you go matters.
A higher level of PKD care.
Whether you’re facing a new PKD diagnosis, or you’ve been managing the disease for years, one of the biggest challenges you face is finding the right healthcare providers. Now you know where to turn for PKD-specific care.
Find a Care Center
View a full list of centers here.
The Program’s Mission
- Ensuring better care for all individuals with PKD
- Understanding PKD through research
- Educating and empowering the community
While we advance research and push for a cure, the PKD Foundation is also committed to improving lives right now. We saw a need. So we launched a program to help you find where to access next-level ADPKD care.
For the first time, patients and families know exactly where to go. The PKD Foundation Centers of Excellence, Partner Clinics, Pediatric Centers of Excellence, and Pediatric Clinics is a national network of providers meeting patient-centered, specialized PKD criteria established by the PKD Foundation.
This elite designation for nephrology practices and clinics helps those affected by PKD better manage their disease, maintain and improve their quality of life, and plan for the future.
We’re improving access to specialized care so you can manage your PKD the best way possible.
Is your clinic interested in the Centers of Excellence program?
At these centers, you can expect:
1
Patient-focused, comprehensive care with the coordination and support of an integrated healthcare team.
2
Access to top PKD experts, leading research, clinical studies, and new therapies.
3
A network for nephrologists, specialists and other providers for referrals, partnerships, and mentoring.
Patient navigator services
Your first point of contact is your patient navigator, an individual or team providing comprehensive coordination of your care. This is a key feature of the Centers of Excellence program.
Your patient navigator(s) will:
- Oversee planning, scheduling, and implementation of day-to-day clinical activities.
- Assist with referrals to outside resources and help coordinate care.
- Schedule follow-up visits and confirm medication changes.
- Act as an information resource for patients and families.
- Provide proactive annual check-ins to assess the need for additional services (e.g., mental health, nutritionist, pain specialist)
- Assist with staff education about PKD.
- Facilitate pre-authorization for insurance coverage.
- Provide education and referral for kidney transplantation and dialysis.
- Identify patients who may be eligible for clinical trials.
How are PKD Centers of Excellence chosen?
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.
What is the difference between a Center of Excellence, Partner Clinic, Pediatric Center of Excellence, and a Pediatric Clinic?
Providers are categorized based on the level of services offered.
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Centers of Excellence provide the broadest range of services and expertise. |
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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. |
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To be a PKD Foundation Pediatric Center of Excellence, a care center offers diagnostic and therapeutic services with identified staff responsible for most services in each of the following: Pediatric Nephrology, Genetics, Pediatric Hepatology, Pediatric Nutrition, Social Work |
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Pediatric Clinics include, at a minimum, a pediatric nephrologist with experience in the specialized management of PKD in children. |
How do Centers of Excellence work?
Centers of Excellence provide comprehensive, multidisciplinary clinical services for families affected by PKD. 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.
What types of medical services do Centers of Excellence provide?
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
Join the PKD Registry
Drive the next medical breakthrough by joining the PKD Registry. Through the Registry, you can easily, securely, and confidentially provide information about your PKD experience.
What should I do if there is not a clinic near me?
If there is not a Center of Excellence near you, please share this document with your nephrologist. We accept applications on a yearly basis.
How does this fit with the PKD Foundation’s research focus?
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).
What are the program’s goals, and how will this benefit the PKD community?
- Improving the lives of patients with PKD and their families through patient-centered care.
- Encouraging disease-specific management strategies.
- Identifying and recognizing gaps in clinical care to improve PKD 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 PKD and forming relationships with patient communities.
- Advancing research.
Contact Us
carecenters@pkdcure.org
816.931.2600
Page last reviewed November 2023
