Overview of program goals and scope
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 grant applications to fund the addition of dedicated staff time toward patient navigation, or other relevant care team member at clinics in the program. Cost and need must be justified by each clinic, and the role responsibilities can be spread out over one or more personnel.
Funding contingent on designation as an PKD Center of Excellence, Partner Clinic, Pediatric Center of Excellence, or Pediatric Partner Clinic (designation and funding applications may be submitted at the same time). Grants provide funding for three years.
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Patient Navigation Expectations
Staff involved in patient navigation services for patients with PKD will be required to attend at least two annual virtual webinars and/or the COE Annual Conference.
Under supervision of the Clinic Director, those serving in the patient navigator role will provide comprehensive coordination of care for patients with PKD and their families/caregivers to eliminate barriers to timely care, facilitate flow through the system, facilitate interactions with clinical research, increase patient and provider satisfaction, maintain point of contact with providers, and serve as the first point of contact for patients and families with PKD.
Role responsibilities include:
- Oversees the planning, scheduling, and implementation of day-to-day clinical activities and procedures for PKD patients.
- Assist patients with PKD with referrals to outside resources and care coordination as needed.
- Schedule follow up visits (e.g., phone calls) to ensure the patient’s needs were met during the care visit and confirm any medication changes
- Provides education and acts as information resource to patients with PKD
- Provide proactive annual check-in with each patient to assess need for other services they may not be aware of (e.g., mental health, nutritionist, pain specialist)
- Collaborates with medical providers, patient care staff and clinic management in the planning and implementation of patient and staff education on PKD.
- Facilitate pre-authorization for insurance coverage of medication, imaging, and other services key to PKD management
- Refer as needed PKD patients to kidney transplantation or educate on various dialysis modalities
- Be the central point of contact for all navigated patients with PKD; including interaction with medical, nursing, ancillary services, and when appropriate the clinical research coordinator. Identify potential patients for Clinical Trials protocols and coordinates with the research coordinator to consent the patient.
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Important dates
Application site opens Application deadline Review period Applicant notification Funding cycle -
Application instructions
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- Clinic Impact Statement – describe care team needs to be supported through the grant and the assumed impact on patients with PKD. Include a clear demonstration of how this funding could lead to an improved process or will elevate care at your clinic.
- Resources and environment — Include description of clinical facilities, access to patient populations, anticipated PKD patient census per year, and other resources available to team members providing patient navigation services.
- Patient Navigation Plan
- List each care team member to participate in patient navigation services. Include educational degree, relevant navigation role responsibilities, PKD-specific training (past or expected) and anticipated percent time dedicated.
- If no care team member currently available, please describe your hiring plan and anticipated characteristics.
- Letter of support – provide letter of support from the PKD Clinic Director or Division Chair ensuring oversight over the patient navigator services program and plan for support of any remaining salary not covered by this grant.
- Budget and Justification (in United States dollars) – Applicants can request up to $80,000 per year for three years. However, the funds requested must align with the percent effort needed for direct PKD-patient support. Applicants will likely not receive the full amount requested; please ensure the Letter of Support includes mention of minimum funding support needed to provide a range. PKD Foundation will do our best to provide sufficient funding to support dedicated time to patient navigation services.
- Other support and institutional commitment — Describe other support you receive for your PKD services including grants or donations that cover salaries, administrative support and/or space. Will your institution contribute any new resources as a result of your designation as a PKD Foundation Center of Excellence?
If you have have any questions, please contact CareCenters@pkdcure.org.
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Past Awardees
Learn more here about past recipients.
The PKD Foundation strives to be transparent related to our decision-making processes. We rely on our COE Advisory Group made up of clinicians and patient stakeholders, who develop recommendations for both designation and funding, as well as the processes we use as a Foundation to make funding decisions.
Award amounts will need to be justified in each proposal based on locality and percent staff time needed to meet patient navigation responsibilities. Each grant awarded will be funded for three-years. Future-year funding is dependent upon the availability of funds and interim progress. The funds awarded must be used solely for the purposes specified in the proposal submitted to and approved by the PKD Foundation as executed by the Clinic Director and institution in strict compliance with the budget attached to the application.
Grantees must submit an Annual Progress Report to be submitted along with a Financial Report. Although Care Team grants are for a three-year period, the PKD Foundation reserves the right to terminate any grant if there has been inadequate progress during the first or second years of the award.
A stipulation to all awards is appropriate attribution of the PKD Foundation in any publication, news release, presentation, etc. that results from work funded by the award. The PKD Foundation must also receive a copy of the publication and/or news release. This responsibility extends beyond the interval of provided funding.
Awardees are asked to please use language similar to the following: This position was partially funded by a grant from the Polycystic Kidney Disease Foundation, pkdcure.org. The Foundation had no role in care team design, data collection and interpretation, or the decision to submit the communication for publication.
The PKD Foundation serves as a grantor not an employer for the care team member(s). The responsibility for liability issues and all reporting requirements including local, state and federal regulations will reside with the employment institution, not the PKD Foundation.