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Core Resources — Clinical Phenotyping

ClinicalTrials.Gov Identifier NCT01873235

ADPKD Cohort: Longitudinal Cohort Study of adult ADPKD patients without ESRD and eGFR>15 ml/min/1.73m 2
Follow-up Duration:  Up to 6 years

Biorepository:

  • Urine
  • Plasma
  • Sera
  • DNA
  • N=298 participants enrolled
  • Age: 45.1 (13.6) years
  • 60% Female
  • 13.4% African American
  • 41.5% with eGFR<60 ml/min/1.73m 2
  • Mayo Risk Class 1C, 1D, or 1E: 75.6%

Clinical Phenotyping
Clinical history:

  • Age of diagnosis and initial presenting symptoms (e.g., pain, hematuria)
  • History of renal and cyst complications: pain, hemorrhage, infection, rupture, stones, hematuria, and nocturia.
  • Cardiovascular complications – valvular heart disease, aortic aneurysms
  • CNS complications – including presence and size of intra-cranial aneurysms
  • Non-ADPKD co-morbid conditions and medications
  • Tolvaptan Use
  • Incident End – stage Kidney Disease (and type of renal replacement therapy)

Family History
– Including age of ESRD of affected family members, and history of extra-renal complications including hepatic disease and intra-cranial aneurysms.

Physical Exam

  • Resting blood pressure and heart rate
  • Height, weight, body mass index

Clinical Laboratory Results

  • Electrolytes (estimated GFR from CKD-Epi equation)
  • Lipid profile
  • Liver function panel
  • Complete Blood Count
  • Urine protein

Renal and Hepatic MRI:

  • Total Kidney Volume (TKV)

Cardiovascular measures (on subset of participants):

  • Aortic Pulse wave velocity
  • Left Ventricular Mass
  • Left Ventricular Ejection fraction
  • Left Ventricular and atrial dimensions
  • Valvular dysfunction

Cognitive Function
(Montreal Cognitive Assessment (MoCA) and Depressive symptoms (Beck Depression Inventory).

  • Montreal Cognitive Assessment (MoCA)
  • Beck Depression Inventory-II

Health-related Quality of Life:

  • NIH PROMIS instruments

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