PKD Care Team Grant Awardees

Emory Clinic has seen a wonderful surge in patients seeking top-notch care in nephrology and PKD. However, this success has prompted the need for extra hands to ensure smooth scheduling, quicker test results, and smoother authorization processes. Changes in the transplant center’s policy have brought more patients our way, though it’s led to some delays that we’re eager to fix. To tackle this, we’re excited
to introduce a patient navigator and support Dr. Saad’s training. We’re gearing up for more patients, shorter wait times, and an even more efficient and satisfying experience for everyone we care for.

The University of Colorado Anschutz Medical Campus has seen remarkable results by funding a nurse navigator dedicated solely to patients with autosomal dominant polycystic kidney disease (ADPKD), experiencing a 50% increase in new patient numbers in just one year. Expanding this support through
the proposed Care Team Grant will enable us to offer comprehensive nursing care, facilitate clinical trials, provide education, coordinate treatments, and ensure seamless support for ADPKD patients across Colorado. This investment will elevate our ability to deliver exceptional care and enhance the overall
patient experience within our PKD Center of Excellence. 

Children’s National’s Inherited and Polycystic Kidney Diseases (IPKD) Program offers comprehensive, multidisciplinary care to children with cystic kidney conditions, including a specialized focus on young patients with ADPKD. With a dedicated team of specialists and a commitment to proactive care, we aim
to enhance the well-being of our young patients by fostering preventive cardiology alliances,
streamlining multidisciplinary care, empowering patient education, ensuring seamless transitions to
adult care, and actively contributing to program development and research, ultimately delivering exceptional care and support tailored to children and adolescents with ADPKD. 

The Care Team Grant at UCSD’s PKD Center of Excellence aims to revolutionize PKD care delivery by addressing key areas of improvement identified through collaboration with clinical experts and patient stakeholders. With dedicated resources, this initiative promises enhanced patient-reported outcomes understanding, streamlined transplant listings, tailored health coaching, and the establishment of a
robust biorepository, all geared towards improving patient experiences and outcomes within a concise timeframe. This grant’s support will be pivotal in driving these transformative changes forward. 

Mayo Clinic Florida’s PKD Center envisions a groundbreaking health coach PKD program, intending to ease the burden of ADPKD on patients and families, enhancing their quality of life. With the support of the PKD Foundation grant, this program will empower patients, create personalized tools for managing ADPKD, and revolutionize care delivery. Additionally, bolstering the PKD patient navigator role will
elevate patient experiences, streamline care coordination, and enhance translational capabilities,
marking a pivotal step forward for the center’s growth and commitment to comprehensive ADPKD care. 

The Swedish Polycystic Kidney Disease Center serves as a vital referral hub for Washington state and beyond, caring for over 230 ADPKD patients with a growing number of referrals. With the essential role of the nurse patient navigator, we’re dedicated to enhancing care quality, reducing patient burdens, and ensuring personalized support for every individual navigating the complexities of ADPKD management. This grant support will empower our navigator, allowing focused and dedicated time to ensure comprehensive care and support for our expanding patient panel, marking a significant step forward in our commitment to exceptional patient care. 

Funding from the Care Team Grant will empower multiple staff members to efficiently manage PKD patient needs, relieving administrative burdens and enabling our PKD administrative assistant to concentrate on delivering exceptional patient facing PKD navigation services. By distributing responsibilities across the team, this support will streamline processes, ensuring prompt and effective
care for our growing roster of PKD patients, marking a significant step towards enhancing our patient focused PKD program. 

The University of Kansas Health System is dedicated to optimizing care for ADPKD patients by addressing obstacles they face in accessing and coordinating their treatment. A patient navigator will streamline care, support patients through treatment complexities, assist with transitions in care, and ensure access to resources and clinical trials, enhancing patient support and maximizing the health system’s resources for comprehensive care delivery. 

The University of Maryland’s Division of Nephrology, a leading referral center in the Mid-Atlantic region for polycystic kidney disease (PKD), aims to significantly enhance patient care. By seeking funding for a patient coordinator/navigator with medical expertise, they intend to proactively monitor treatment compliance, improve patient education, streamline referrals to specialists, enhance research
opportunities, and better support their growing population of ADPKD patients on Jynarque, ensuring a substantial positive impact on the care experience.

The PKD Clinic at the University of Wisconsin has experienced significant growth, doubling unique patient numbers and tripling total patient visits. However, with fragmented care and increasing workload, the clinic will use funding for a dedicated patient navigator to ensure smoother, more coordinated care, offering patients a reliable point of contact and freeing up providers to expand the clinic’s reach and provide state-of-the-art care to more PKD patients in Wisconsin and neighboring areas. This support will have a substantial impact on patient experience and the clinic’s ability to reach and benefit a larger population of PKD patients.

The Yale Nephrology program spans multiple hospitals and clinics across Southern Connecticut and aims to enhance care for ADPKD patients. Their proposed navigator will serve as a dedicated liaison, facilitating personalized prescreening, ensuring uniform delivery of specialized services, promoting equity in care access, coordinating clinical trials, transitioning care between pediatric and adult nephrology, and
fostering strong partnerships with private practices. This navigator role will streamline patient
experiences and collaborations, ensuring comprehensive care and support for ADPKD patients across
the region.