Where you go matters.
A higher level of ADPKD care.
Whether you’re facing a new ADPKD diagnosis, or you’ve been managing the disease for years, one of the biggest challenges you face is finding the right healthcare providers. Where do you turn for ADPKD-specific care?
Find a Center of Excellence or Partner Clinic
The Program’s Mission
- Ensuring better care for all individuals with ADPKD
- Understanding ADPKD 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 and Partner Clinics is a national network of providers meeting patient-centered, specialized ADPKD criteria established by the PKD Foundation.
This elite designation for nephrology practices and clinics helps those affected by ADPKD 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 ADPKD the best way possible.
At these centers, you can expect:
Patient-focused, comprehensive care with the coordination and support of an integrated healthcare team.
Access to top ADPKD experts, leading research, clinical studies and new therapies.
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 ADPKD.
- 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 and a Partner Clinic?
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.|
How do Centers of Excellence work?
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.
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:
- Pain management
- Patient navigation services
Non-core specialists may include:
- Pediatric nephrologists
- Kidney nutritionists/dieticians
- Liver surgeons
- Obstetricians (high-risk pregnancy specialization)
- Social workers
- Transplant surgeons
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 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.
Page last reviewed November 2022