Pediatric Center of Excellence Application

This Pediatric Center of Excellence Application is intended for institutions providing pediatric PKD care and that would like to be designated as a Pediatric Center of Excellence (COE) within the PKD Foundation Centers of Excellence Program.

Application Instructions

• Complete the entire application using this form.
• You may save your progress and return later by selecting “Save” at the bottom of each page.
• A direct link to resume your application will be sent to your email the first time you click “Save.” Please note that additional “Save” clicks will not generate a new email. To return to your application, you will need to use the link provided in the original “Save and Return” email.
• All applications are due by Friday, August 28 at 5:00 PM CT.
• The form will close at that time; late submissions will not be accepted.
• Questions? Contact savannam@pkdcure.org.

Please note: This year’s application process will be more selective than in previous years, with only 5–10 care centers being accepted across all designations. Selection will be based on overall application strength and ability to improve access to expert PKD care in underserved geographic areas or underserved high-need communities.

Care Team Table

In the table below, indicate the members of your care team currently serving pediatric persons with PKD and their caregivers.

• For each specialty, indicate the name and email of the specialist, if they are at the institution (on campus) or if they are by referral only.
  • Core services/specialists marked with an asterisk (*) are required to be considered for this designation.
  • Pediatric Centers of Excellence applicants may not provide core services (*) by community referral.
  • Email addresses of all listed specialists are required. Contact information for each care team member noted above will be utilized in a Centers of Excellence listserv with opportunities for engagement and resources.
  • Referrals to specialists at PKD Foundation-designated Centers of Excellence are encouraged.
• If listing more than one specialist per row, please use same text box. Note any differences under the notes column.

Please provide a justification of PKD expertise for the Clinic Director(s), nephrologists, relevant nurse practitioners, physician assistants, other advanced practice providers, and support staff who treat or support pediatric PKD patients. Examples of expertise may include: 

• Training under a recognized PKD expert 
• Management of 10+ PKD pediatric patients per year 
• Participation as an investigator in an pediatric PKD clinical study 
• PKD-specific education, outreach, or community engagement 

Note: Justification must be provided for at least two nephrologists to ensure continuity in the event of a clinic director transition. 

Supporting Documents: Please include a CV or biosketch for all personnel identified as “PKD experts.” A minimum of two documents must be provided.

Additional Requirements:

• A letter of support from the Division Chief confirming the clinic’s ability to provide comprehensive care for individuals with ARPKD and pediatric ADPKD is also required.
• For clinics within the same institution as an already-designated Adult PKD Center of Excellence, please also include a letter of support from the Adult PKD Clinic Director.

Note: This question is for PKD Foundation informational purposes only and will not be included in review criteria. Pediatric Centers of Excellence are not required to designate a patient navigator. 

Patient navigator services may be provided collectively by one or more staff members, provided the following role requirements are met. 

Under supervision of the Clinic Director, serving in the patient navigator role will provide:

• Comprehensive coordination of care for patients with PKD and their families/caregivers  
• Support to help eliminate barriers to timely care
• Facilitation of patient flow throughout the healthcare system
• Assistance with patient interactions and participation in clinical research opportunities
• Ongoing communication and coordination between patients, families, and providers
• Efforts to enhance patient and provider satisfaction
• Service as a primary point of contact for patients and families affected by PKD 

Pediatric Center of Excellence (COE) designations will require annual progress reports to be delivered to the PKD Foundation by January 31 of each year. Centers are expected to engage with the network of PKD-familiar clinicians in the program, as well as the PKD patient community.

Professional Education and Awareness 
Institution’s Care Team Members will be required to participate in the following annual activities: 

• Annual PKD Centers of Excellence Conference (timing and format will vary from year to year).
• Institution staff peer-to-peer educational webinars (e.g. Case Study Discussions in ADPKD). Foundation will conduct at least two (2) of these webinars per year and Institution will be required to participate in at least one annually. 

Patient Advocacy and Awareness 
Institution’s Care Team Members will be required to participate in at least three patient advocacy or education activities and provide a report of these activities in the annual report that it provides to the Foundation. These may include:  

• Local Walk for PKD (complementary table will be provided) 
• Promotion of events being conducted by the local PKD Community 
• Hosting a patient facing community awareness or education meeting at your Institution (e.g. COE Patient Advisory Panel meeting)
• Hosting an educational tour of your research facility or labs 
• Participating as a faculty for patient facing webinars or PKDCON patient conference sessions 
• Offering meeting/support group space to local PKD Communities 
• Participating in events or initiatives aimed at raising awareness of PKD or addressing the needs of medically underserved patients in the community

ADPKD Registry 
I acknowledge and agree that our institution and/or care team is required to refer ADPKD patients to the PKD Foundation ADPKD Registry and to report on these referrals in the annual report submitted to the Foundation. 

Patient Advisory Panel 
Institution is encouraged to recruit and maintain a COE Patient Advisory Panel (“PAP”). The PAP should consist of 4 to 5 members such as PKD patients, caregivers, and representatives from local PKD Foundation communities. The Foundation will name one member of the PAP once Institution has created the PAP. Institution faculty may facilitate PAP meetings but may not be named members of the PAP. The PAP is encouraged to meet at least once a year to discuss feedback on care services, as well as collaboration on community-facing education and advocacy initiatives. A letter of support from the PAP is strongly encouraged as part of Institution's annual progress report to Foundation. 

Center of Excellence Review Process 
The applicant understands that if the COE Advisory Panel determines the application does not meet the criteria for Center of Excellence designation as set forth by the PKD Foundation, the clinic may be offered a Partner Clinic designation. The applicant will also receive constructive feedback to support a future reapplication in the next designation cycle.