For Researchers


About the NKN

The NephCure Kidney Network (NKN) is a network with the vision of establishing a global community of people with Nephrotic Syndrome (NS) diseases who are interested in designing and participating in clinical research relevant to them. The NKN is an initiative of NephCure Kidney International, whose mission is to support research to find the cause, better treatment, and a cure for FSGS and primary NS.

Patient-Centered

The NKN is a patient-powered research network, part of an innovative “network of networks” known as the National Patient-Centered Clinical Research Network, or PCORnet. PCORnet is an innovative initiative funded by the Patient-Centered Outcomes Research Institute (PCORI) whose mission is to enable people to make informed healthcare decisions by efficiently conducting clinical research relevant to their needs.

The NKN takes a different approach to research, one that focuses on research topics, questions, and outcomes most important to NS patients and those who care for them. Patients and caregivers help identify knowledge gaps by sharing their experiences with the daily burden of NS.

Patient-Led

Committed to the principle of research done differently, the NKN employs a governance model with majority representation from patients, caregivers, and patient advocates, while also including meaningful representation from other key stakeholder groups, including researchers, clinicians, and biopharmaceutical industry representatives. These stakeholders guide strategic decision making and advocate for the broad use of the registry in research and funded studies. Patients and caregivers are involved in and often lead the key components of the NKN governance model:

  • The NKN Steering Committee serves as the primary governance locus for the network and is responsible for policymaking and general oversight.
  • The NKN Research Committee reviews proposed research studies and requests for collaboration.
  • The NKN Data Access Committee reviews requests for existing NKN data.

NKN Research Priorities

The NKN engages this broad network of NS patients and caregivers to identify patient-prioritized research topics. Based on recent efforts, the following areas have been identified as high-priority for new research (listed in order of priority):

  • Causes of Nephrotic Syndrome
  • New Treatments
  • Complementary or Alternative Medicines
  • Management Strategies for Medication Side Effects
  • Kidney Transplantation
  • Tests to diagnose Nephrotic Syndrome
  • Quality of Life Improvement
  • Nutrition
  • Mental Health
The NKN will prioritize proposed research that addresses these topics.

NKN Data

The NKN welcomes and encourages qualified researchers with diverse interests and expertise to utilize the NKN’s patient-reported information. The NKN Annual Report gives a broad overview of information collected by the NKN.

NKN data is primarily patient-reported information under the following categories:

  • NS Disease Status and Diagnosis
  • Quality of Life (Adult, Child, or Parent’s on Behalf of Child)
  • Family History and Socioeconomic Information
  • Medial History and Patient Habits
  • Research Opinions and Preferences
  • Pregnancy Information
For a detailed list of data elements collected by the NKN, please review the Data Element List. The NKN will prioritize data requests in service of projects that address the patient-generated research priorities listed above.

Other Research Collaborations

The NKN can also assist qualified researchers with participant recruitment and patient engagement. This includes services such as:

  • Sending out study recruitment emails to eligible registrants for participation in clinical research studies.
  • Administering new surveys to collect patient-reported data from the NKN registrants.
  • Obtaining patient and caregiver perspectives on the planning and conduct of a research study.
The NKN will prioritize research collaboration requests for projects that address the patient-generated research priorities listed above. Depending on the burden to the NKN study team, a fee may be involved.

Requests and More Information

Interested researchers can learn more about working with the NKN via the links below.

Data Requests Other Research Requests To request data or to submit a proposed research project or collaboration, please complete the Research Request Form and email to
NKN-Operations@ArborResearch.org and registry@nephcure.org
For general inquiries, please complete the following information below:

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Established in collaboration with the Office of Rare Diseases Research (ORDR), National Center National Center for Advancing Translational Sciences (NCATS), National Institutes of Health as part of the Global Rare Diseases Patient Registry and Data Repository (GRDR) pilot project, partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (1306-04903) for development of the National Patient-Centered Clinical Research Network, known as PCORnet.

The NephCure Kidney Network is an initiative of NephCure Kidney International (NKI). NKI is a U.S. tax exempt 501(c)(3) public charity established in 1999 with the mission of supporting research to find the cause, better treatment, and a cure for FSGS and primary Nephrotic Syndrome diseases. (EIN: 38-3569922)

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