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Research
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Projects
Long-Term Outcomes of Patients with FSGS - A Multicenter Real-World Evidence (RWE) Study
Large retrospective studies of rare diseases face difficult-to-overcome challenges, including variability in data, uniform definitions, and a need for a regulatory framework for data sharing. In this study, nine collaborating sites enrolled 723 patients with FSGS of primary, genetic, or unknown etiology.
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Investigators:
Dr. Swati Arora, Allegheny Health Network, Pittsburgh, PA, United States.
Dr. Raymond K. Hsu, University of California San Francisco, San Francisco, CA, United States.
Dr. Kuang-Yu Jen, University of California Davis, Davis, CA, United States.
Dr. Stewart H. Lecker, Beth Israel Deaconess Medical Center, Boston, MA, United States.
Dr. Tingting Li, Washington University in St Louis, St Louis, MO, United States.
Dr. Iyad S. Mansour, Banner University Medical Center Tucson, Tucson, AZ, United States.
Dr. Jose D. Mena, Beth Israel Deaconess Medical Center, Boston, MA, United States.
Dr. Nidia C. Messias, Washington University in St Louis, St Louis, MO, United States.
Dr. Ali Poyan Mehr, The Permanente Medical Group Inc, San Francisco, CA, United States.
Dr. Tripti Singh, University of Wisconsin-Madison, Madison, WI, United States.
Dr. Isaac E. Stillman, Mount Sinai Health System, New York, NY, United States.
Dr. Amanda Tchakarov, The UT Health Science Center at McGovern Medical School, Houston, TX, United States.
Dr. Dia R. Waguespack, The UT Health Science Center McGovern Medical School, Houston, TX, United States.
Dr. Nasim Wiegley, University of California Davis, Davis, CA, United States.
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Data and project coordinators:
Alice J. Drozd, The Permanente Medical Group Inc, San Francisco, CA, United States.
Timothy Legenzoff, Allegheny Health Network, Pittsburgh, PA, United States.
Nancy D. Mendelssohn, The Permanente Medical Group Inc, San Francisco, CA, United States.
Gabriela Sanchez, The Permanente Medical Group Inc, San Francisco, CA, United States.
Tejwinder S. Sandhu, The Permanente Medical Group Inc, San Francisco, CA, United States.
Divya Seth, University of California San Francisco, San Francisco, CA, United States.
Ria S. Sood, The Permanente Medical Group Inc, San Francisco, CA, United States.
Jennifer Yip, The Permanente Medical Group Inc, San Francisco, CA, United States.
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STUDY SITES
STUDY SPONSOR
