ADPKD Centers of Excellence Program

Vision

The PKD Foundation Centers of Excellence (COE) program is built upon the belief that the best way to provide ADPKD-centered care is through patient-focused, comprehensive care with the coordination and support of an integrated care team.

The program’s mission stands on three pillars:

1. understanding PKD through research
2. ensuring better care for all individuals with ADPKD
3. educating and empowering the community.

Program goals

• To identify and recognize gaps in clinical care to improve ADPKD 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.
• To utilize patient education and engagement activities among the regional community to increase awareness of the disease and form relationships with their patient community.
• To advance research to improve the lives of patients with ADPKD and their families treated at centers, and participate in the ADPKD Registry. Ultimately, clinical data collected through the Registry will provide an evidence-base upon which to create standards of care in the United States, and specialized PKD training for healthcare professionals.

Care team and services

ADPKD Centers of Excellence provide comprehensive multidisciplinary clinical service for families affected by ADPKD. Services are centered around an organized ADPKD 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 adult person with ADPKD. Depending on the level of services offered, ADPKD Centers will be categorized as Centers of Excellence, Partner Clinics, 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
• Nutrition
• Hepatology
• Genetics
• Pain
• Patient navigator services 

Non-core specialists that are preferred but not required include:

• Pediatric nephrologists
• Renal nutritionists/ dieticians
• Urologists
• Cardiologists
• Liver surgeons
• Neurosurgeons/ neurologists
• Obstetricians (high-risk pregnancy specialization)
• Psychologists/ Psychiatrists
• Social Workers
• Transplant surgeons

Core personnel at a Partner Clinic or Pediatric Clinic will include, at a minimum, a nephrologist interested in specialized management of ADPKD.

In addition, Clinics in the ADPKD COE program will be required to participate in the following:

• Mentorship networks between clinicians requesting peer-to-peer support at Partner Clinics
• Participation in PKDF educational initiatives and quarterly webinars
• Collaboration with the local ADPKD community, including educational and advocacy initiatives and dissemination of information about ADPKD and PKDF
• Patient Advisory Panel: to be recruited by the clinic and must include representatives from the ADPKD patient community. The panel should meet at least once a year to discuss feedback on care services, as well as collaboration on community-facing education and advocacy initiatives

For questions or comments, please contact eliseh@pkdcure.org.