A Higher Level of PKD Care
For Clinicians or Researchers: Navigating the complexities of PKD care requires patient-focused collaboration with a multidisciplinary healthcare team. Identifying and accessing PKD-specific expertise is crucial in optimizing patient outcomes and advancing research.
For Patients:Whether you’re newly diagnosed with PKD or have been managing it for years, one of the biggest challenges is finding the right healthcare providers. Now, you have a clear direction for accessing care specifically tailored to PKD.
The Program’s Mission
Ensuring better care for everyone with PKD
Understanding PKD through research
Educating and empowering the community
Ensuring better care for everyone with PKD
- To identify and recognize gaps in clinical care to improve PKD outcomes, encourage disease-specific management strategies, and improve health equity.
- To directly support the mission of the PKD Foundation by developing and maintaining mentoring relationships between recognized PKD experts and less experienced nephrologists and community specialists.
Understanding PKD through research
- To advance research to improve the lives of patients with PKD and their families treated at centers and participate in the ADPKD Registry. Ultimately, clinical data collected through the Registry will provide evidence for creating standards of care in the United States and specialized PKD training for healthcare professionals.
Educating and empowering the community
- To utilize patient education and engagement activities among the regional community to increase awareness of the disease and form relationships with their patient community.
FAQs
Find answers to the most commonly asked questions about PKD Centers of Excellence.
What criteria are used to designate a center as a PKD Foundation COE?
- 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
What specialized services and expertise does a COE offer?
- Nephrology
- Radiology
- Hepatology
- Genetics
- Pain
- Patient navigator services, as well as others
How does the COE program ensure consistent and high-quality care across participating centers?
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.
What resources and support does the PKD Foundation provide to COE?
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.
How does participation in the COE program impact patient outcomes?
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.