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Abstract: TH-PO985

Racial/Ethnic Disparities in Protocol Adherence for the Cure Glomerulonephropathy Network (CureGN)

Session Information

Category: Glomerular Diseases

  • 1203 Glomerular Diseases: Clinical, Outcomes, and Trials


  • Wenderfer, Scott E., Baylor College of Medicine, Houston, Texas, United States
  • Helmuth, Margaret, Arbor Research Collaborative for Health, Ann Arbor, Michigan, United States
  • Ayoub, Isabelle, The Ohio State University Wexner Medical Center, Columbus, Ohio, United States
  • Bartosh, Sharon M., University of Wisconsin Children's Hospital, Madison, Wisconsin, United States
  • Cattran, Daniel C., Toronto General Hospital, Toronto, Ontario, Canada
  • Gipson, Debbie S., University of Michigan Mott Children's Hospital, Ann Arbor, Michigan, United States
  • Greenbaum, Larry A., Emory University, Atlanta, Georgia, United States
  • Hidalgo, Guillermo, Eastern Carolina University, Greenville, North Carolina, United States
  • Hingorani, Sangeeta R., Seattle Children’s Hospital, Seattle, Washington, United States
  • Hladunewich, Michelle A., University of Toronto, Toronto, Ontario, Canada
  • Jain, Koyal, University of North Carolina Kidney Center, Chapel Hill, North Carolina, United States
  • Khalid, Myda, Indiana University, Indianapolis, Indiana, United States
  • Kidd, Jason M., VCU Medical Center, Richmond, Virginia, United States
  • Kopp, Jeffrey B., NIDDK, NIH, Bethesda, Maryland, United States
  • Nester, Carla Marie, University of Iowa, Iowa City, Iowa, United States
  • Nestor, Jordan Gabriela, Columbia University, New York, New York, United States
  • Oliverio, Andrea L., University of Michigan, Ann Arbor, Michigan, United States
  • Parekh, Rulan S., The Hospital For Sick Children, Toronto, Ontario, Canada
  • Reynolds, Monica Lona, University of North Carolina at Chapel Hill, Cary, North Carolina, United States
  • Rizk, Dana, University of Alabama at Birmingham, Birmingham, Alabama, United States
  • Steinke, Julia M., Helen DeVos Children's Hospital, Grand Rapids, Michigan, United States
  • Tuttle, Katherine R., University of Washington School of Medicine, Spokane, Washington, United States
  • Twombley, Katherine, Medical University of South Carolina, Charleston, South Carolina, United States
  • Vasylyeva, Tetyana L., Texas Tech University Health Sciences Center, Lubbock, Texas, United States
  • O'Shaughnessy, Michelle M., Stanford University, Palo Alto, California, United States

Racial/ethnic disparities exist among glomerular disease patients with respect to access to care and patient outcomes. However, few data exist on how race/ethnicity influences protocol adherence and data completeness in clinical research studies. Identification of such disparities will improve trial design and enhance generalizability of research findings.


CureGN is a 70-center prospective cohort study of patients with MCD, FSGS, MN, IgA nephropathy, or IgA vasculitis. We compared metrics on retention, visit completion, data [clinical, patient-reported outcomes (PRO), laboratory, pathology] and biosample collection [urine, blood, including RNA and DNA] across racial/ethnic groups using repeated measures logistic regression with generalized estimating equations and Cox proportional-hazards models.


Overall protocol adherence was high (80-97%) for all races and ethnicities. Among 2243 adults and children enrolled at time of data analysis, significant differences in visit completion and sample collection were observed, with lower scores for Blacks and Hispanics on many metrics (Table).


Significant racial/ethnic differences in protocol adherence exist among enrollees with glomerular disease in CureGN. Rates were significantly lower in blacks and Hispanics. The diversity of research staff and site investigators may influence these disparities. Creation of a diverse Patient Advisory Council might reduce disparities.


  • NIDDK Support