Maryland PKD RTCC | Clinical and Translational Core | Adult ADPKD Cohort
ClinicalTrials.Gov Identifier NCT01873235
Contact: Stephen Seliger, Core Director; info@pkd-rrc.org
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
Echocardiography:
- 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)
