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WEBINAR: ARE YOU PREPARED FOR PREPARE-NS?

Innovations in Clinical Outcomes Assessments for Nephrotic Syndrome Patients

January 25, 2024 | Noon–1 pm EST

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Learn about patient-focused drug development, clinical outcomes assessments, the Prepare-NS study, and how you can help advance patient-centered outcomes.

 

Get Involved in Prepare-NS

ADVANCING PATIENT-CENTERED OUTCOMES IN NEPHROTIC SYNDROME

Edema is both terribly burdensome and an indicator of progressive disease, yet it is not commonly captured in clinical trials for nephrotic syndrome-causing conditions. By developing health questionnaires focused on edema impacts, Prepare-NS is at the forefront of advancing patient-centered outcomes in nephrotic syndrome treatments.

Join us for this webinar to learn about the pioneering efforts of the FDA-funded Prepare-NS study, which is focused on the development of patient-reported and caregiver-reported questionnaires to measure impacts of edema. You will hear from patients on their lived experience with edema alongside commentary from experts in pediatric and adult nephrology and patient-focused drug development.

At the end of this webinar, participants will be familiar with emerging, patient-focused approaches to capturing edema related to nephrotic syndrome for use in clinical trials. There will also be an opportunity to engage in a discussion about patients’ and caregivers’ experiences with edema related to nephrotic syndrome and how those experiences can be leveraged to improve nephrotic syndrome care.

PRESENTERS

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BARBARA S. GILLESPIE, MD, FASN (MODERATOR) VP and Therapeutic Head of Nephrology, Fortrea; Adjunct Professor, University of North CarolinaDr. Gillespie is a board-certified nephrologist who is currently a Vice President and Therapeutic Head of Nephrology at Fortrea (formerly Labcorp), supporting sponsors on the development of new drugs and devices for kidney patients. She also teaches as an adjunct faculty member at UNC. She completed her residency in internal medicine at UNC and her nephrology fellowship at Duke University. 
She is a member of ISGD's Clinical Trials Committee, has served on the Kidney Health Initiative Board of Directors, and is a leader on numerous other workgroups, advisory boards, and steering committees throughout the nephrology landscape.
Devin Peipert
DEVIN PEIPERT, PHD Assistant Professor, Department of Medical Social Sciences, Northwestern University Feinberg School of MedicineDr. Peipert is a patient-reported outcomes (PRO) researcher and psychometrician who works on the development and validation of PRO Clinical Outcome Assessments that are essential to understanding patients’ functionality, symptoms, and well-being using advanced psychometric methods. He is a co-PI of PREPARE-NS with Dr. Salmon and leads the quantitative study design and execution, psychometric analyses, and quantitative data interpretation.
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ELOISE SALMON, MD Clinical Assistant Professor, Pediatric Nephrology, University of Michigan

Dr. Salmon is a pediatric nephrologist who treats patients with a range of kidney care needs, including dialysis and transplant. She completed her residency and fellowship training at the Children’s Hospital of Philadelphia. Within Prepare-NS, Dr. Salmon provides leadership of the stakeholder engagement activities, serves as the liaison with the NIH-sponsored consortia NEPTUNE and CureGN, and leads the implementation of multi-site study procedures leveraging the NEPTUNE and CureGN infrastructure during the UH3 phase. She is co-PI with Devin Peipert.

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SEFERIANA DAY, MSW MEMBRANOUS NEPHROPATHY PATIENT
Seferiana was diagnosed with Primary Membranous Nephropathy in 2016 at age 30. She lives in Seattle, WA with her partner Kreg, cat Billie, and new pup Frida. Seferiana has worked in politics and local government for over a decade, supporting first-time candidates and social justice causes. She holds a Master in Social Work from the University of Washington, and B.A.s in Sociology and Women Studies from Seattle University. In her spare time, Seferiana loves reading, running, and traveling to see art.
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"The doctors of  tomorrow will have tools at their disposal unlike any before in human history…

Yet every day that goes by where these tools are not realized is a day that patients and their families have to struggle through the pain and suffering of their condition."

REP. MICHAEL C. BURGESSVice-Chair, House Subcommittee on Health, 113th Congress