PKD Care Team Grants

Overview of program goals and scope

The ADPKD Centers of Excellence 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 guided by patient navigation services. The program’s mission stands on three pillars: understanding PKD through research, ensuring better care for all individuals with ADPKD, 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 ADPKD Center of Excellence or Partner Clinic (designation and funding applications may be submitted at the same time). Grants provide funding for three years.

Patient Navigation Expectations

Staff involved in patient navigation services for patients with ADPKD will be required to attend at least two annual virtual webinars and/or the ADPKD 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 ADPKD 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 ADPKD.

Role responsibilities include:

• Oversees the planning, scheduling, and implementation of day-to-day clinical activities and procedures for ADPKD patients.
• Assist patients with ADPKD 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 ADPKD
• 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 ADPKD.
• Facilitate pre-authorization for insurance coverage of medication, imaging, and other services key to ADPKD management
• Refer as needed ADPKD patients to kidney transplantation or educate on various dialysis modalities
• Be the central point of contact for all navigated patients with ADPKD; 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.

Program specifics

Application instructions

1. Clinic Impact Statement – describe care team needs to be supported through the grant and the assumed impact on patients with ADPKD. Include a clear demonstration of how this funding could lead to an improved process or will elevate care at your clinic.
2. Resources and environment  — Include description of clinical facilities, access to patient populations, anticipated ADPKD patient census per year, and other resources available to team members providing patient navigation services.
3. Patient Navigation Plan
   1. List each care team member to participate in patient navigation services. Include educational degree, relevant navigation role responsibilities, ADPKD-specific training (past or expected) and anticipated percent time dedicated.
   2. If no care team member currently available, please describe your hiring plan and anticipated characteristics.
4. Letter of support – provide letter of support from the ADPKD 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.
5. 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 ADPKD-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. PKDF will do our best to provide sufficient funding to support dedicated time to patient navigation services.
6. Other support and institutional commitment  — Describe other support you receive for your ADPKD 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 an PKDF Center of Excellence?

If you have have any questions, please contact research@pkdcure.org.