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Clinical Trials

The following clinical trials are currently recruiting participants. If you would like more information regarding the trial or how to participate, please contact the study coordinator.

Trial Name Sponsor Summary Details Study Coordinator
Staged- PKD Sanofi Placebo controlled study to determine the effect of venglustat on the rate of total kidney volume (TKV) growth and estimated glomerular filtration rate (eGFR) decline in patients at risk of rapidly progressive Autosomal Dominant Polycystic Kidney Disease (ADPKD). • Length: 2 years
• Time commitment: 13 visits ranging from 2 - 4 hours
• Procedures: Blood and urine labs, 4 MRI's, ECG, eye exams and physical exams
• Eligibility: Age 18 to 50 GFR 45 to 90, NOT taking tolvaptan/Jynarque

Cathy Creed

DUPLEX Retrophin Study of an investigational medication (Sparsentan) in Patients With Primary Focal Segmental Glomerulosclerosis (FSGS)
This study will be blinded and patients will be randomly assigned to take either Sparsentan or Irbesartan, to see which treatment has a better effect on declining kidney function and the level of protein in the urine.
• Length: 2 years
• Time: Approximately 2 hours per visit
• Procedures: blood and urine labs, ECG, physical exam questionnaires
• Eligibility: age 18 to 75, GFR 30 and above, diagnosed with FSGS

Cathy Creed

Cognitive Impairment KUMC Kidney Institute Evaluation of the changes in memory and thinking before and after transplant
  •  Length: 1-2 years

  • Time commitment: 1-2 visits pre-transplant, and 2 visits post-transplant to complete assessments

  • Procedures: Memory assessments, medical history, and questionnaires

  • Eligibility: age 25-70, pre-transplant ESRD patients listed for renal transplantation at KU
Erin Delaney

PKD Biomarker Repository NIH Identification of reliable biological markers of cyst growth in early stages of PKD
  • Length: 5 years
  • Time commitment:  Two hours once per year Procedures: MRI, blood and urine labs, and questionnaires                        
  • Eligibility: age 4-35, with early stage PKD, normal kidney function, family history of PKD, individuals without PKD diagnosis may also participate
Cathy Creed
Zhuo Tang

PKD Registry NIH Collect and store medical information in a PKD database used by investigators of KUMC to assess feasibility when developing new PKD studies and to recruit for future trials.
  • Length: Indefinitely
  • Time commitment: 30 min. visit (may be over the phone
  • Procedures: Questionnaire
  • Eligibility: Diagnosed with PKD
Zhuo Tang
Cathy Creed
Debbie Griffin
CRISP IV University of Pittsburgh
Consortium for Radiologic Imaging Studies of Polycystic Kidney Disease (CRISP) IV: Prognosis for End-Stage Renal Disease and Biomarker Validation 
  • Length: 4 years
  • Time commitment: One in-person enrollment visit - 1 hour
  • Two blood draws - 30-minute visit to a lab
  • Three times a year - 30-minute telephone visit
  • Procedures: Blood labs, medical history and questionnaires
  • Eligibility: Participated in the past CRISP studies and have not reached end stage renal disease (ESRD)or participated in the HALT-PKD study
Zhuo Tang
Debbie Griffin
Fabry Registry Genzyme Collection of clinical data on patients with Fabry disease around the world in an effort to help health professionals involved in treatment or diagnosis better understand Fabry Disease and its management
  • Length: Indefinitely
  • Time commitment: Data will be obtained from medical record. 30 minutes or less phone call if additional information needed
  • Procedures: Questionnaires
  • Eligibility: Diagnosed with Fabry Disease
Debbie Griffin
Cognitive Function-Everolimus Novartis, llT Alterations in Cognitive Function and Cerebral Blood Flow after Conversion from Calcineurin Inhibitors to Everolimus. This single center longitudinal 12 weeks observational study will determine whether conversion from calcineurin inhibitor (Tacrolimus) to an mTOR inhibitor, Everolimus, is associated with improvement in cognition and cerebral blood flow.
  • Goal:  Enroll 20 kidney transplant recipients who will undergo conversion and 10 matched controls at the University of Kansas Medical Center.
Erin Delaney

The following clinical trials are active and NOT currently recruiting participants. If you would like more information regarding the trial, please contact the study coordinator.

Trial Name Sponsor Summary Study Coordinator
Vasculitis ChemoCentryx Phase 2 Study evalute the safety and efficacy of CCX168 in subjects with anit-neutrophil cytoplasmic antibody (ANCA)-associated vasulitis (AAV).
Tolvaptan Otsuka Tolvaptan is being studied as a possible treatment for ADPKD. ADPKD is a disease that causes kidney cysts (cysts are like fluid-filled balloons), worsening kidney function, blood in the urine, kidney pain, high blood pressure, kidney stones, kidney infections, and cysts in the liver or other parts of the body. Debbie Griffin
CRISP III NIH Efficacy of Magnetic Resonance Imaging (MRI) can detect changes in kidney size. Debbie Griffin 
Modifier NIH/Mayo Identification of genetic factors that influence the severity of PKD in individuals and families by collection of blood for DNA isolation Cathy Creed
REPRISE Otsuka A phase III study comparing the efficacy of Tolvaptan to placebo in changing the rate of decline of kidney function in PKD patients with late stage chronic kidney disease  Debbie Griffin
Otuska 211 Otsuka Open label extension study to evaluate the long term safety of Tolvaptan in patients with PKD Debbie Griffin
CRISP III NIH Evaluation of the accuracy and validity of MRIs to determine disease progression in PKD  
KD019 ADPKD Kadmon A phase 2a study is aimed at determining the safety, tolerability and effectiveness of KD019 in slowing the progression of PKD.  Cathy Creed
Frontiers: Heartland Institute for Clinical and Translational Research A pilot and feasability study of administering niacinamide (the main component of vitamin B3) to patients with PKD and preliminary exploration of its use to slow the progression of PKD Cathy Creed
TEMPO 4(271) Otsuka Multi-center, open-label, extension study to evaluate the long-term efficacy and safety of oral tolvaptan tablet regimens in subjects with autosomal dominant polycystic kidney disease Debbie Griffin
PRX-102 Protalix An extension of phase 1/2, open label, dose ranging study to evaluate the safety, tolerability, pharmacokinetics and exploratory efficacy parameters of PRX-102 administered by intravenous infusion every 2 weeks for 12 weeks to adult Fabry patients Cathy Creed
Mentor NIH Membranous nephropathy trial of rituximab vs cyclosporine in the treatment of idiopathic membranous nephropathy (IMN) Zhuo Tang

Study Coordinator Contact Information
Cathy Creed, RN                   (913) 588-0053
Erin Delaney, RN                   (913) 588-3520
Debbie Griffin, RN, CDE         (913) 588-7691
Zhuo Tang, MD, MS                (913) 588-3985
Andrew Jurgensen                  (913) 574-0895

Last modified: Aug 12, 2020