Maryland PKD RTCC | Clinical and Translational Core | Adult ADPKD Cohort

ClinicalTrials.Gov Identifier NCT01873235

Contact: Stephen Seliger, Core Director;

Core Resources — Clinical Phenotyping

ADPKD Cohort: Longitudinal Cohort Study of adult ADPKD patients without ESRD and eGFR>15 ml/min/1.73m 2

Study Sample (as of 12/2022):

  • N=249 participants enrolled
  • Age: 45.3 (13.3) years
  • 62% Female
  • 12% African American
  • estimated GFR: 72.5 (33.4) ml/min/1.73m 2
  • 43.3% with eGFR<60 ml/min/1.73m 2
  • Mayo Risk Class 1C, 1D, or 1E: 75.5%

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.
  • Extra-renal cysts – hepatic, pancreatic, other
  • GI complications – diverticulae, herniae (including type and surgical correction)
  • Cardiovascular complications – valvular heart disease, aortic aneurysms
  • CNS complications – including presence and size of intra-cranial aneurysms
  • Exposures – including caffeine, tobacco, iodinated contrast, hormonal therapies and oral contraception, environmental toxins
  • Non-ADPKD co-morbid conditions and medications

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

Clinical Laboratory Results

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

Renal and Hepatic MRI:

  • Total Kidney Volume (TKV) and total liver volume (TLV)

Vascular Function:

  • Aortic Pulse wave velocity


  • Left Ventricular Mass
  • Left Ventricular Ejection fraction
  • Left ventricular and atrial dimensions
  • Valvular dysfunction
  • Pericardial effusions

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

    Health-related Quality of Life
  • (NIH PROMIS instruments)

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