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To create a world without kidney diseases, the ASN Alliance for Kidney Health elevates care by educating and informing, driving breakthroughs and innovation, and advocating for policies that create transformative changes in kidney medicine throughout the world.

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Kidney Week

Abstract: INFO20

The Improving Renal Outcomes Collaborative: Improving Health, Longevity, and Quality of Life for Children and Young Adults with Kidney Disease

Session Information

  • Informational Posters
    October 25, 2018 | Location: Exhibit Hall, San Diego Convention Center
    Abstract Time: 10:00 AM - 12:00 PM

Category:

  • No subcategory defined

Authors

  • Hooper, David K., Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
  • Dahale, Devesh S., Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
  • Davis, Raeanne E., Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
  • Loos, Stephanie A., Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
  • Goebel, Jens W., Children's Hospital Colorado, Aurora, Colorado, United States
  • Margolis, Peter, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States

Group or Team Name

  • The Improving Renal Outcomes Collaborative
Description

Children with a kidney transplant (KT) have a life expectancy that is 15 years less than healthy children. Adolescents with a KT are 3 times more likely to lose their graft than any other age group, leading to further declines in health, longevity and quality of life. Despite available therapies, up to 60% of all KT recipients have uncontrolled blood pressure which contributes to cardiovascular disease and decreased allograft survival.

The Improving Renal Outcomes Collaborative (IROC) is a multi-center learning health system dedicated to improving health for children and young adults with kidney disease. We accomplish this by engaging all stakeholders, partnering with patients and families in co-production, sharing best practices and data from every clinical encounter, supporting structured quality improvement at participating centers, and integrating research with clinical care. Centers commit site participation fees, data entry, and center leadership. IROC provides information technology support, a registry capable of receiving electronic data transfer from external data sources such as EHRs and UNOS, training/coaching in quality improvement, infrastructure and methodologies for spreading best practices, a vibrant patient/family work group, and access to data for research.

In 18 months, we have recruited 26 participating centers accounting for > 40% of all children transplanted in the United States last year. To date, transplant encounters for 1,175 patients with 2,546 clinical visits have been entered into the IROC registry. Centers have successfully completed projects to standardize blood pressure measurement and improve blood pressure control. Parent/patient partners have co-produced educational videos and a home blood pressure monitoring toolkit. Future efforts will focus on reducing acute rejection, decreasing hospitalizations and “for cause” biopsies, and improving quality of life.

By developing a learning health system designed to learn from every patient every visit across 26 centers, we have built the platform and infrastructure to systematically improve health, longevity and quality of life for children and young adults with kidney disease. Interested centers are invited to join. Visit IROCnow.org for more information.