PKD Care Team Grants

2022 Request for Applications

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 COEs (Partner Clinics will not be required to have a navigator available). 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 (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 Review Procedures

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. 

Funding

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.

Reporting requirements

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.

Attribution

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.

Liability policy & reporting responsibilities

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.

Important dates

Application site opens — June 2022
Application deadline — Aug 29 2022
Review period — Sept to Oct 2022
Applicant notification — Oct 2022
Funding cycle — Jan 1, 2023 to Dec 31, 2025

View the 2022 Centers of Excellence Inception Conference

Application instructions

  1. Clinic Impact Statement — describe care team needs to be supported through the grant and the assumed impact on the care received by patients with ADPKD 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.

Page last updated June 2022

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