Research

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).	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 in relation to changes seen in images of the brain	Length: 1-2 years Time commitment: 1-2 visits pre-transplant, and 2 visits prost-transplant to complete assessments Procedures: Memory assessments, brain MRI, collection of blood and urine, medical history, and questionnaires Eligibility: age 25-70, pre-transplant ESRD patients listed for renal transplantation at KU	Sean Obrien Jessica Wilson
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 Elisabeth Laundy
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	Elisabeth Laundy Cathy Creed Debbie Griffin
CRISP IV	University of Pittsburgh NIH NIDDK	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	Elisabeth Laundy 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
Renal Tubular Function in Living Donors	Investigator initiated	Evaluate the renal tubular function pre- and post-nephrectomy in living donors.	The study will help to better understand the long-term effects of loss of nephrons on tubular function and injury in otherwise healthy humans. This will be a prospective trial where living donors will have renal function and tubular function checked before nephrectomy and at one year post-nephrectomy.	Sean Obrien Jessica Wilson
Cognitive Function-Everolimus	Novartis, llT	Title: 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.	Sean Obrien Jessica Wilson

Study Coordinator Contact Information

Cathy Creed, RN
ccreed@kumc.edu
(913) 588-0053

Sean Obrien
sobrien5@kumc.edu
(913) 574-0895

Jessica Wilson
jwilson12@kumc.edu
(913) 574-0894

Debbie Griffin, RN, CDE
dgriffin3@kumc.edu
(913) 588-7691

Elisabeth Laundy
elaundy@kumc.edu
(913) 588-8983