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Polycystic Kidney Disease Data Repository

To collect information about PKD so that investigators may fully understand its complications, including high blood pressure, heart attack and stroke. This information may also aid in the development of improved treatment strategies.

Participant information:

  • Patients enrolled in this study will have the diagnosis of ADPKD.
  • Diagnostic criteria for at-risk individuals (i.e., with a first degree family member with ADPKD):
    • The presence of at least two (unilateral or bilateral) renal cysts.
    • Two cysts in each kidney are considered sufficient for diagnosis in aged 15 to 29 years and in 30 to 59 years, respectively.
  • In families of unknown genotype:
    • The presence of three or more (unilateral or bilateral) renal cysts is sufficient for establishing the diagnosis in individuals aged 15 to 39 years.
    • Two or more cysts in each kidney is sufficient for individuals aged 40-59 years.
    • 4 or more cysts in each kidney is required in individuals ≥60 years of age.

Contact information:
Stephanie Donahue, NP
212.746.1591
sld9001@nyp.org