PKD Centers of Excellence

The Virtual Centers of Excellence Conference brings together clinic directors, care teams, navigators, and researchers from across the country to share expertise, explore innovations in PKD care, and strengthen our collective impact. This event highlights the progress and opportunities within the COE network, from advancing patient-centered research to expanding access to coordinated, specialized care.

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A one-hour, interactive webinar featuring discussions about ADPKD case studies. This session will explore the latest insights on ADPKD genetics, testing, and result interpretation.

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• Arlene Chapman, MD – University of Chicago
• Neera Dahl, MD, PhD – Mayo Clinic
• Whitney Besse, MD – Yale University

This session aims to equip fellows with the knowledge needed to summarize the foundational genetic mechanisms that underlie PKD. It underscores the significance of genetic factors in shaping the landscape of the disease and how it manifests clinically.

In addition, discussion will include identification process of genetic risk factors within family histories and emphasize the pivotal role of genetic counseling in the care of patients with PKD.

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• Mary-Beth Roberts MS, CGC – In affiliation with Cleveland Clinic Children’s Hospital

This session will dive into the unique nutritional needs shaped by individual PKD progression, and co-existing conditions. Learners will explore the intricacies of fluid intake, protein needs, and mineral balance, all while respecting the patients’ food choices.  

Additionally, practical strategies for teamwork, including referral protocols, communication best practices, and joint management plans will be discussed. Lastly, attendees will evaluate how personalized nutrition can manage PKD symptoms and boost patients’ quality of life for optimal health outcomes. 

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• Brooke Nichols, MS, RDN – University of Chicago

The session will provide learners with an understanding of pre-emptive transplant and the implications. Participants will gain insights into how pre-emptive transplants serve as a proactive approach to kidney health, mitigating the need for late-stage interventions and dialysis.

Additionally, the session will delve into critical timing considerations concerning transplant discussions with kidney disease patients. Discussions will shed light on the vital role nephrologists play in the early management of kidney health. The significance of timely referrals and consultations will be emphasized.

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• Heedeok Han, MD – Columbia University
• Mariana Chang, MD – Columbia University
• David Cohen, MD – Columbia University
• Mary Bauer – Living Kidney Donor

This session offers a unique opportunity to delve into complex patient cases and engage in dynamic discussions that foster critical thinking and problem-solving skills. Through a series of thought-provoking case studies, participants will navigate challenging diagnoses, treatment dilemmas, and ethical considerations, drawing upon their expertise to explore multifaceted solutions. 

Cyst Infection & Nephrectomy in ADPKD
Pranav Garimella, MBBS, MPH, FASN – University of California San Diego

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Polycystic Liver Disease: challenges in management
Craig Gordon, MD, MS – Tufts Medical Center 

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Live Q&A

Pranav Garimella, MBBS, MPH, FASN – University of California San Diego
Craig Gordon, MD, MS – Tufts Medical Center 

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Access “The VUS Challenge in Cystic Kidney Disease: A Case-Based Review”
Download the VUS Infographic

Authors: Abinet M. Aklilu, MD, MPH, Ashima Gulati, MD, PhD, Kayla J. Kolbert, MGCS, CGC, Hana Yang PhD, Peter C. Harris PhD, Neera K. Dahl MD, PhD

Figure 2. An algorithm for assessing potential clinical relevance of a VUS in polycystic kidney disease.

If you have completed the algorithm and have reached the yellow box in Figure 2, please consider contacting Neera Dahl, MD, PhD via email at dahl.neera@mayo.edu.

Access “Genetic Testing in Polycystic Kidney Disease: A Multispecialty Discussion”

Is imaging enough to diagnose polycystic kidney disease (PKD)? Experts discuss where genetic testing may fit in the spectrum of PKD management.