For Researchers


The NephCure Kidney Network (NKN) is a network with the vision of establishing a global community of people with primary Nephrotic Syndrome (NS) diseases who are interested in designing and participating in clinical research relevant to them.

The NKN welcomes and encourages 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 more information about NKN Data, 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.

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