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.
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.
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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
Core personnel at a Partner Clinic or Pediatric Clinic will include, at a minimum, a nephrologist interested in specialized management of PKD.
In addition, Clinics in the PKD COE program will be required to participate 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
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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
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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 PKDF (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 Partner 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 instructions
As an applicant for the PKD COE program, you’ll be asked to create a Proposal Central account. This helps us to track your application progress and best manage conflicts for our review process. Please upload this completed form as well as any relevant documents (e.g., CVs/resumes) to your application in the portal.
Clinics must be based in the United States in order to apply. Multi-site practices will need to apply for designation unique to each location. Designations cannot be combined over multiple locations.
carecenters@pkdcure.org
Designations
Center of Excellence
Partner Clinic
Pediatric Center of Excellence
Pediatric Clinic
Center of Excellence
- Clinic general information
- Patients — Including current patient census, population demographic and health equity initiatives.
- Clinic Care Services — Including typical patient wait time for an appointment and follow-up experience, care team members.
- PKD Expertise: justification of PKD-specific knowledge for key personnel.
- Patient Navigator Services — an acknowledgement of role responsibilities and expectations.
- Pediatric PKD Patients — a description of applicable pediatric clinics or pediatric-to-adult care transition practices.
- Research — listings of all current, previous (in the past five years), or anticipated participation in clinical research (both industry-sponsored and investigator-initiated).
Partner Clinic
- Clinic general information
- Patients — Including current patient census and population demographics.
- Clinic Care Services — Including typical patient wait time for an appointment and follow-up experience, care team members.
- PKD Expertise: justification of PKD-specific knowledge for key personnel.
- Research — listings of all current participation in clinical research (both industry-sponsored and investigator-initiated).
Pediatric Center of Excellence
- Clinic general information
- Patients — Including current patient census and population demographics.
- Clinic Care Services — Including typical patient wait time for an appointment and follow-up experience, care team members.
- PKD Expertise: justification of pediatric PKD-specific knowledge for key personnel.
- Patient Navigator Services — an acknowledgement of role responsibilities and expectations.
- Pediatric-to-Adult Care Transition: details of the clinics relationship with adult specialists and transition processes.
- Research — listings of all current participation in clinical research (both industry-sponsored and investigator-initiated).
Pediatric Clinic
- Clinic general information
- Patients — Including current patient census and population demographics.
- Clinic Care Services — Including typical patient wait time for an appointment and follow-up experience, care team members.
- PKD Expertise: justification of pediatric PKD-specific knowledge for key personnel.
- Pediatric-to-Adult Care Transition: details of the clinics relationship with adult specialists and transition processes.
- Research — listings of all current participation in clinical research (both industry-sponsored and investigator-initiated).