The PKD Centers of Excellence program is built upon the belief that the best way to provide PKD-centered care is through patient-focused, comprehensive care with the coordination and support of an integrated care team guided by patient navigation services. The program’s mission stands on three pillars: understanding PKD through research, ensuring better care for all individuals with PKD, and educating and empowering the community.
Under this RFA, the PKD Foundation solicits clinic applications to be designated as either a PKD Center of Excellence, Partner Clinic, Pediatric Center of Excellence, or Pediatric Clinic.
Under this RFA, the PKD Foundation solicits clinic applications to be designated as either a PKD Center of Excellence, Partner Clinic, Pediatric Center of Excellence, or Pediatric Clinic.
Important Dates
COE Program Clinic Applications
All applications are submitted through a HIPAA-compliant JotForm. For questions, please contact carecenters@pkdcure.org
Application Opens: May 29, 2026
Application Deadline: August 28, 2026 at 5:00 PM CT
Application Review Period: September - end of October
Designation Notifications: By the end of October
Adult Programs
Center of Excellence Application: Link coming soon
Partner Clinic Application: Link coming soon
Pediatric Programs
Pediatric Center of Excellence Application: Link coming soon
Pediatric Clinic Application: Link coming soon
Annual Progress Reports
All reports are submitted through a HIPAA-compliant JotForm.
Reporting Opens: December 1, 2026
Submission Deadline: January 31, 2027
Care team and services
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 continually optimize clinical management.
Core clinic personnel must have established and demonstrated expertise in caring for an individual with PKD. Depending on the level of services offered, PKD Centers with ADPKD expertise will be categorized as Centers of Excellence or Partner Clinics. Depending on the level of services offered, PKD Centers specialized in the management of pediatric ADPKD or ARPKD will be designated as Pediatric Centers of Excellence or Pediatric Clinics.
-
COE Care Team Expectations
A Center of Excellence will offer comprehensive diagnostic and therapeutic services with identified staff responsible for most services in each of the following disciplines:
- Nephrology
- Radiology
- Hepatology
- Genetics
- Pain
- Patient navigator services
Non-core specialists that are preferred but not required include:
- Renal nutritionists/ dieticians
- Urologists
- Cardiologists
- Liver surgeons
- Neurosurgeons/ neurologists
- Obstetricians (high-risk pregnancy specialization)
- Psychologists/ Psychiatrists
- Social Workers
- Transplant surgeons
-
Partner and Pediatric Clinic Care Team Expectations
Core personnel at a Partner Clinic or Pediatric Clinic will include, at a minimum, a nephrologist interested in specialized management of PKD or pediatric PKD.
Participation in the following:
- Mentorship networks between clinicians requesting peer-to-peer support at local institutions
- Participation in PKD Foundation educational initiatives and quarterly webinars
- Collaboration with the local PKD community, including educational and advocacy initiatives and dissemination of information about PKD and the PKD Foundation.
-
Major COE Requirements
- Multiple experienced PKD 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 PKD
-
Minor COE Requirements
COEs must meet a subset of at least three of the following:
- Access to at least four of the non-core specialists as listed above in “COE Care Team Expectations”
- Dedicated PKD clinic time at least once per month
- Existing patient navigator services
- Affiliated transplant center
- Available advanced CKD clinic and workflow to dialysis center referral (peritoneal dialysis, hemodialysis, and home hemodialysis)
- Current (or recent) interactions with the patient community through PKD Foundation (e.g., served as faculty for a webinar or patient education session, hosted a booth at a local Walk for PKD)
Progress Reports
Designation as a PKD Center of Excellence, Partner Clinic, Pediatric Center of Excellence, or Pediatric Clinic is valid for three years. Clinics must participate in a review if there have been any changes to their clinic director and they must reapply at the end of their designation term if they wish to remain designated within the COE program. To maintain designation, current Clinics must complete an annual progress report to PKD Foundation by January 31 each year.
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 90 days of suspension or the PKD Center of Excellence designation will be revoked.
Application information
All PKD Foundation Centers of Excellence Program applications must be submitted through our HIPAA-compliant platform, JotForm. The form includes a save and return feature, allowing you to complete your application at your convenience.
Application Deadline: Friday, August 28 at 5:00 PM CT
Late submissions will not be accepted.
Application Review Period: September – end of October
Designation Notifications: By the end of November
Application Review Process
The PKD Foundation is committed to a transparent and rigorous review process. Applications are evaluated in collaboration with the COE Advisory Panel, composed of clinicians and patient stakeholders. The panel provides recommendations on both designation and funding, which inform final decisions made by the Foundation.
Important Information
This year’s application process is more selective, with only 5–10 care centers to be accepted. Selection will be based on application strength, geographic distribution, and demonstrated need, with priority given to underserved regions.
Clinics must be based in the United States to apply. Multi-site practices must submit a separate application for each location, as designations cannot be combined across sites.
For questions, please contact carecenters@pkdcure.org
Application Components
Center of Excellence
Partner Clinic
Pediatric Center of Excellence
Pediatric Clinic
Center of Excellence
-
Clinic Information — Overview of your clinic, including structure, services, and operations.
-
Patient Population — Current patient census, population demographics, and health equity initiatives.
-
Care Delivery & Services — Description of care team members, typical wait times for appointments, and the patient follow-up experience.
-
PKD Expertise — Justification of PKD-specific knowledge and experience among key personnel.
-
Patient Navigator Services — Acknowledgment of patient navigator role responsibilities and expectations within your clinic.
-
Pediatric Care — Description of pediatric PKD services and/or pediatric-to-adult care transition practices, as applicable.
-
Research Participation — Summary of current, past (within the last five years), and anticipated involvement in clinical research, including both industry-sponsored and investigator-initiated studies.
Partner Clinic
-
Clinic Information — Overview of your clinic, including structure and operations.
-
Patient Population — Current patient census and population demographics.
-
Care Delivery & Services — Description of care team members, typical wait times for appointments, and the patient follow-up experience.
-
PKD Expertise — Justification of PKD-specific knowledge and experience among key personnel.
-
Research Participation (not required) — Summary of current involvement in clinical research, including both industry-sponsored and investigator-initiated studies.
Pediatric Center of Excellence
-
Clinic Information — Overview of your clinic, including structure, services, and operations.
-
Patient Population — Current patient census and population demographics.
-
Care Delivery & Services — Description of care team members, typical wait times for appointments, and the patient follow-up experience.
-
PKD Expertise — Justification of pediatric PKD-specific knowledge and experience among key personnel.
-
Patient Navigator Services — Acknowledgment of patient navigator role responsibilities and expectations within your clinic.
-
Pediatric-to-Adult Care Transition — Description of the clinic’s relationship with adult specialists and established transition processes.
-
Research Participation — Summary of current involvement in clinical research, including both industry-sponsored and investigator-initiated studies.
Pediatric Clinic
-
Clinic Information — Overview of your clinic, including structure, services, and operations.
-
Patient Population — Current patient census and population demographics.
-
Care Delivery & Services — Description of care team members, typical wait times for appointments, and the patient follow-up experience.
-
PKD Expertise — Justification of pediatric PKD-specific knowledge and experience among key personnel.
-
Pediatric-to-Adult Care Transition — Description of the clinic’s relationship with adult specialists and established transition processes.
-
Research Participation (not required) — Summary of current involvement in clinical research, including both industry-sponsored and investigator-initiated studies.