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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: INFO13

A National Registry for People With All Stages and Types of Kidney Disease: The National Kidney Foundation (NKF) Patient Network

Session Information

  • Informational Posters
    November 03, 2022 | Location: Exhibit Hall, Orange County Convention Center‚ West Building
    Abstract Time: 10:00 AM - 12:00 PM

Category: Educational Research

  • No subcategory defined

Authors

  • Inker, Lesley Ann, Tufts Medical Center, Boston, Massachusetts, United States
  • Bonebrake, Lisa, Alport Syndrome Foundation, Phoenix, Arizona, United States
  • Chang, Alex R., Geisinger Health, Danville, Pennsylvania, United States
  • Claudin, Rachel, National Kidney Foundation, New York, New York, United States
  • Ferrè, Silvia, National Kidney Foundation, New York, New York, United States
  • Forfang, Derek L., National Kidney Foundation, New York, New York, United States
  • Gwadry-Sridhar, Femida, Pulse Infoframe, London, Ontario, Canada
  • Mitchell, Kristi, Health Equity Outcomes Inc, Vienna, Virginia, United States
  • Rocco, Michael V., Wake Forest University School of Medicine, Winston-Salem, North Carolina, United States
  • Tangri, Navdeep, University of Manitoba Max Rady College of Medicine, Winnipeg, Manitoba, Canada
  • Warady, Bradley A., Children's Mercy Saint Joseph, Saint Joseph, Missouri, United States
  • Willis, Kerry, National Kidney Foundation, New York, New York, United States
Description

Background: The National Kidney Foundation (NKF) Patient Network is the first national U.S. kidney disease patient registry focused on patient-centered research, care, and treatments throughout the continuum of chronic kidney disease (CKD). The NKF has launched a registry expansion, the NKF Patient Network – Alport Syndrome, in partnership with the Alport Syndrome Foundation (ASF), to help advance treatments for Alport syndrome.
Methods: The Network is a longitudinal observational cohort study of patient-entered data with or without electronic healthcare records (EHR) linkage in collaboration with health systems. People with kidney disease with any stage or type, age >17 years (or any age if diagnosed with Alport syndrome), are invited to join through the NKF’s outreach campaign, referral by a provider, or the ASF. Patients self-enroll into the online registry (NKFPatientNetwork.org) and share their experiences and health data through a secure portal where they can find education and support. The first health system partner is Geisinger. Pulse Infoframe is the technology partner that developed the registry on its healthieTM 2.0 AWS cloud platform.
Results: During the national U.S. launch in February 2021 thru June 2022, a total of 1,656 people consented (1,256 from the general public, 275 from Geisinger, 125 from ASF). Mean age is 59 years (17 people < 17 years), 59% are women, and 81% self-identified as White and non-Hispanic. Based on self-reported data, 11% of people have stage 1 or 2 CKD, 49% stage 3, 16% stage 4, and 24% stage 5 or end-stage kidney disease. In addition, 12% of people reported a history of kidney transplant. About 27% of people completed quality-of-life surveys.
Conclusion: Key priorities for the Network are to facilitate the recruitment of vulnerable populations, those with low digital readiness, and those who were not previously aware of having kidney disease. To do so, the Network will partner with additional health systems, community clinics, and patient advocacy groups in the U.S. and globally to increase recruit from previously unengaged populations. Ultimately, the Network can assist in improving the lives of people with kidney disease.

Funding

  • Funding: Commercial support – Foundational support for the NKF Patient Network was provided through a collaboration with Bayer AG. AstraZeneca and Novartis are platinum sponsors. Boehringer Ingelheim is a gold sponsor. Non-commercial support – The NKF Patient Network – Alport Syndrome is supported by the Alport Syndrome Foundation.
Abstract: INFO13

A National Registry for People With All Stages and Types of Kidney Disease: The National Kidney Foundation (NKF) Patient Network

Session Information

  • Informational Posters
    November 04, 2022 | Location: Exhibit Hall, Orange County Convention Center‚ West Building
    Abstract Time: 10:00 AM - 12:00 PM

Category:

  • No subcategory defined

Authors

  • Inker, Lesley Ann, Tufts Medical Center, Boston, Massachusetts, United States
  • Bonebrake, Lisa, Alport Syndrome Foundation, Phoenix, Arizona, United States
  • Chang, Alex R., Geisinger Health, Danville, Pennsylvania, United States
  • Claudin, Rachel, National Kidney Foundation, New York, New York, United States
  • Ferrè, Silvia, National Kidney Foundation, New York, New York, United States
  • Forfang, Derek L., National Kidney Foundation, New York, New York, United States
  • Gwadry-Sridhar, Femida, Pulse Infoframe, London, Ontario, Canada
  • Mitchell, Kristi, Health Equity Outcomes Inc, Vienna, Virginia, United States
  • Rocco, Michael V., Wake Forest University School of Medicine, Winston-Salem, North Carolina, United States
  • Tangri, Navdeep, University of Manitoba Max Rady College of Medicine, Winnipeg, Manitoba, Canada
  • Warady, Bradley A., Children's Mercy Saint Joseph, Saint Joseph, Missouri, United States
  • Willis, Kerry, National Kidney Foundation, New York, New York, United States
Description

Background: The National Kidney Foundation (NKF) Patient Network is the first national U.S. kidney disease patient registry focused on patient-centered research, care, and treatments throughout the continuum of chronic kidney disease (CKD). The NKF has launched a registry expansion, the NKF Patient Network – Alport Syndrome, in partnership with the Alport Syndrome Foundation (ASF), to help advance treatments for Alport syndrome.
Methods: The Network is a longitudinal observational cohort study of patient-entered data with or without electronic healthcare records (EHR) linkage in collaboration with health systems. People with kidney disease with any stage or type, age >17 years (or any age if diagnosed with Alport syndrome), are invited to join through the NKF’s outreach campaign, referral by a provider, or the ASF. Patients self-enroll into the online registry (NKFPatientNetwork.org) and share their experiences and health data through a secure portal where they can find education and support. The first health system partner is Geisinger. Pulse Infoframe is the technology partner that developed the registry on its healthieTM 2.0 AWS cloud platform.
Results: During the national U.S. launch in February 2021 thru June 2022, a total of 1,656 people consented (1,256 from the general public, 275 from Geisinger, 125 from ASF). Mean age is 59 years (17 people < 17 years), 59% are women, and 81% self-identified as White and non-Hispanic. Based on self-reported data, 11% of people have stage 1 or 2 CKD, 49% stage 3, 16% stage 4, and 24% stage 5 or end-stage kidney disease. In addition, 12% of people reported a history of kidney transplant. About 27% of people completed quality-of-life surveys.
Conclusion: Key priorities for the Network are to facilitate the recruitment of vulnerable populations, those with low digital readiness, and those who were not previously aware of having kidney disease. To do so, the Network will partner with additional health systems, community clinics, and patient advocacy groups in the U.S. and globally to increase recruit from previously unengaged populations. Ultimately, the Network can assist in improving the lives of people with kidney disease.

Abstract: INFO13

A National Registry for People With All Stages and Types of Kidney Disease: The National Kidney Foundation (NKF) Patient Network

Session Information

  • Informational Posters
    November 05, 2022 | Location: Exhibit Hall, Orange County Convention Center‚ West Building
    Abstract Time: 10:00 AM - 12:00 PM

Category:

  • No subcategory defined

Authors

  • Inker, Lesley Ann, Tufts Medical Center, Boston, Massachusetts, United States
  • Bonebrake, Lisa, Alport Syndrome Foundation, Phoenix, Arizona, United States
  • Chang, Alex R., Geisinger Health, Danville, Pennsylvania, United States
  • Claudin, Rachel, National Kidney Foundation, New York, New York, United States
  • Ferrè, Silvia, National Kidney Foundation, New York, New York, United States
  • Forfang, Derek L., National Kidney Foundation, New York, New York, United States
  • Gwadry-Sridhar, Femida, Pulse Infoframe, London, Ontario, Canada
  • Mitchell, Kristi, Health Equity Outcomes Inc, Vienna, Virginia, United States
  • Rocco, Michael V., Wake Forest University School of Medicine, Winston-Salem, North Carolina, United States
  • Tangri, Navdeep, University of Manitoba Max Rady College of Medicine, Winnipeg, Manitoba, Canada
  • Warady, Bradley A., Children's Mercy Saint Joseph, Saint Joseph, Missouri, United States
  • Willis, Kerry, National Kidney Foundation, New York, New York, United States
Description

Background: The National Kidney Foundation (NKF) Patient Network is the first national U.S. kidney disease patient registry focused on patient-centered research, care, and treatments throughout the continuum of chronic kidney disease (CKD). The NKF has launched a registry expansion, the NKF Patient Network – Alport Syndrome, in partnership with the Alport Syndrome Foundation (ASF), to help advance treatments for Alport syndrome.
Methods: The Network is a longitudinal observational cohort study of patient-entered data with or without electronic healthcare records (EHR) linkage in collaboration with health systems. People with kidney disease with any stage or type, age >17 years (or any age if diagnosed with Alport syndrome), are invited to join through the NKF’s outreach campaign, referral by a provider, or the ASF. Patients self-enroll into the online registry (NKFPatientNetwork.org) and share their experiences and health data through a secure portal where they can find education and support. The first health system partner is Geisinger. Pulse Infoframe is the technology partner that developed the registry on its healthieTM 2.0 AWS cloud platform.
Results: During the national U.S. launch in February 2021 thru June 2022, a total of 1,656 people consented (1,256 from the general public, 275 from Geisinger, 125 from ASF). Mean age is 59 years (17 people < 17 years), 59% are women, and 81% self-identified as White and non-Hispanic. Based on self-reported data, 11% of people have stage 1 or 2 CKD, 49% stage 3, 16% stage 4, and 24% stage 5 or end-stage kidney disease. In addition, 12% of people reported a history of kidney transplant. About 27% of people completed quality-of-life surveys.
Conclusion: Key priorities for the Network are to facilitate the recruitment of vulnerable populations, those with low digital readiness, and those who were not previously aware of having kidney disease. To do so, the Network will partner with additional health systems, community clinics, and patient advocacy groups in the U.S. and globally to increase recruit from previously unengaged populations. Ultimately, the Network can assist in improving the lives of people with kidney disease.