PKDCON Follow Up — Your Questions Answered

Living with PKD
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Recorded on Tuesday August 31, 2021 7 p.m. CDT

About

PKDCON 2021 brought so many of us together for education and connections. All of that great education likely created questions once you started applying that new knowledge to your daily life. Additionally, maybe you had a great question during the session, but there just wasn’t time to address it. Join us for this follow up webinar to get your questions answered. Submit questions during registration to allow the experts time to craft a thoughtful response to your question. Q&A will also be available during the session.

Learning objectives

  • Learn answers to questions you had once you began applying new information from PKDCON

  • Have an opportunity to address questions from PKDCON

Speakers

Terry Watnick, M.D.

Terry Watnick, MD

Terry Watnick, M.D. is the Joan B. and John H. Sadler Professor of Nephrology at the University of Maryland School of Medicine. She received her medical degree from the Yale School of Medicine and completed internal medicine training at Yale-New Haven Hospital. Dr. Watnick moved to the Johns Hopkins Hospital where she received clinical and research training in Nephrology. Dr. Watnick has a laboratory that focuses on understanding the factors that cause aneurysms in ADPKD. In addition, she has been an investigator in several multicenter clinical trials recruiting patients with ADPKD, including TEMPO, REPRISE and TAME. Dr. Watnick is the Principal Investigator of the NIH funded Maryland Polycystic Kidney Disease Research and Translation Core Center. She is also the PI of the Central Coordinating Site for the Polycystic Kidney Disease Research and Translation Core Centers. Dr. Watnick previously served as the Chair of the PKD Foundation Scientific Advisory Committee (SAC) and was a member of the Board of Trustees.

 

Erum Hartung, M.D., MTR

Erum Hartung, MD, MTR

Dr. Erum Hartung is an attending pediatric nephrologist at Children’s Hospital of Philadelphia (CHOP) and an Assistant Professor of Pediatrics in the Perelman School of Medicine of the University of Pennsylvania. Her clinical and research focus is in polycystic kidney disease (PKD), particularly autosomal recessive polycystic kidney disease (ARPKD). She co-directs the Combined Kidney/Liver Program at CHOP, which specializes in the care of children with ARPKD and other genetic kidney/liver diseases and ciliopathies. Her research aims to accelerate the development of new treatments for ARPKD through observational and database studies to better define the natural history of ARPKD, and through imaging studies to develop new biomarkers of kidney and liver disease progression. Dr. Hartung serves on the PKD Foundation’s Science Advisory Committee and PKD in Children Council, and was the lead author of their ARPKD Patient Handbook. She also serves as Director of the Pediatric Nephrology Fellowship Program at CHOP, where she helps to train the next generation of pediatric nephrologists.

 

Diana Bruen

Diana Bruen, MS, RD

Diana is a specialized renal dietitian with a focus on proactive nutrition for PKD. She brings over 13 years of nutrition experience and expertise to the table with more than half of that focused in the renal field.  Her superpower is translating complicated science into understandable concepts and moving those concepts into action with doable dietary changes.  Diana is a pioneer in the Plant-Focused Ketogenic Diet for PKD and also specialized in plant-based diets for CKD, oxalate management, and recipe & menu development.

 

Elise Hoover, Senior Director of Research

Elise Hoover

Elise is the Senior Director of Research at the PKD Foundation. She led the design and implementation of the ADPKD Registry along with members of the clinician, researcher, and patient communities. Before joining PKDF, Elise worked as a Clinical Research Coordinator at Tufts Medical Center on PKD studies such as REPRISE (the tolvaptan clinical trial), as well as held an epidemiology fellowship at the National Cancer Institute. She’s excited to be able to contribute to patient-centered research in her position at PKDF.

Related Resources

ADPKD Registry Annual Report 2021: What We’re Learning from Participants

ADPKD Registry Annual Report 2021: What We’re Learning from Participants

The ADPKD Registry was launched in September 2019. It is the first nationwide, patient-reported database for ADPKD, and so far over 2,300 people have signed up! By completing our modules, participants are providing valuable insights on ADPKD, diet and lifestyle, quality of life, living with liver cysts, family history, and pain. Each year, we plan to produce an annual report to share with you what we’re learning from participant responses to these modules.

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