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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 or complete the Nephrology Clinical Research Interest Form and we will contact you.

Polycystic Kidney Disease Trials

Trial Name Sponsor Summary Details Study Coordinator
EPOC PKD NIH This observational study will collect blood and urine and clinical information from individuals with early-stages of polycystic kidney disease (PKD), The long-term goal is to develop new knowledge of biomarkers that indicate changes in the disease progression. An understanding of biomarkers will benefit PKD patients as new therapies are being developed and tested.
  • 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, and normal kidney function

More information about EPOC PKD

Cathy Creed

PKD Repository KUMC Jared Grantham Kidney Institute The University of Kansas Medical Center is establishing a biorepository of blood and urine samples from adults with Polycystic Kidney Disease (PKD) in order to provide specimens to investigators for the discovery of biomarkers.

Biomarkers may help monitor PKD progression and determine the effectiveness of new treatments
  • Length: One Visit Only
  • Time commitment: One Hour
  • Procedures: fasting blood and urine collection, blood pressure, medical history questionnaire
  • Eligibility: diagnosed with PKD, age 18 – 70, have had an MRI or CT scan within the last 5 years

More information about PKD Repository

Cathy Creed

REGULUS 8429 Regulus Therapeutics A phase 1B trial to learn how well RGLS8429 works and how safe it is in Adult Participants with Autosomal Dominant Polycystic Kidney Disease
  • Length: 4 months
  • Time Commitment: 11 visits over 4 months, each visit varies in duration
  • Procedures: EKG, MRI, physical exams, collection of blood and urine, medical history, and questionnaires
  • Eligibility: age 18-70 and diagnosed with ADPKD
More information about REGULUS 8429

Cathy Creed

VX22-KDI-801 “Vertex PKD Imaging Study” Vertex Pharmaceuticals Incorporated The VX22-KDI-801 Study is looking to enroll individuals who have autosomal dominant polycystic kidney disease (ADPKD) so that researchers may evaluate how well the imaging procedures assess differences between those with and without kidney disease.

The VX22-KDI-801 Study will be evaluating the ability of 2 types of imaging procedures, PET/CT and MRI to assess differences between adults with ADPKD and healthy participants, as well as tracking ADPKD disease progression.
  • Length: 2 years
  • Time commitment: Each visit varies in duration
  • Procedures: PET/CT and MRI scans, vitals, ECG, physical examination, vital signs, collection of blood and urine, medical  history, and questionnaires
  • Eligibility: age 18-60 and diagnosed with ADPKD

Cathy Creed

Jordan Haferbier

General Nephrology Trials

Trial Name Sponsor Summary Details Study Coordinator
Sparsentan TVTX-RE021-20 Travere A phase 2 study to learn how safe and effective sparsentan in combination with sodium glucose cotransporter-2 (SGLT2) in adults with immunoglobulin a nephropathy.
  • Length: 28 weeks with treatment period over 24 weeks 
  • Time commitment: 6 visits- Baseline visit 1, week 2, 4, 12, 24 and then safety check at week 28 
  • Procedures: physical exams, collection of blood and urine, medical history, and questionnaires 
  • Eligibility: Over 18 on a stable SGLT2 medication and ACEi/ARB medication

Jordan Haferbier

Sirus Novartis A Phase 3 trial to see the efficacy, safety, and tolerability of ianalumab on top of standard of care therapy in participants with active lupus nephritis.
  • Length: 144 weeks broken into two phases- Phase 1 is week 0-72 and Phase 2 is week 72-144.
  • Time Commitment: visits every 4 weeks 
  • Procedures: ECG, renal biopsy, physical exams, collection of blood and urine, and medical history
  • Eligibility: Over 18 with active Lupus Nephritis as defined by a renal biopsy.

Abigail Joyce

SPK- Fabry Fabry 001 Spark Therapeutics A phase 1/2 pre-screening protocol for adult males with Fabry disease to assess eligibility for future gene therapy clinical trials (including SPK-10002-101).
  • Length: 28 days
  • Time Commitment: 1 half day visit, follow up phone call
  • Procedures: ECG, blood test, and liver ultrasound
  • Eligibility: age 18+ males and diagnosed with fabry disease

Cathy Creed

Noah Schnieders

SPK-10002-101 Spark Therapeutics A phase 1/2, open-label study to evaluate the safety, tolerability, and exploratory efficacy of a single intravenous dose of SPK-10002 gene therapy in adults with Fabry disease.
  • Details: Length: 5 years 
  • Time commitment: Many visit over the 5 years 
  • Procedures: Many test including some invasive procedures 
  • Eligibility: Age 18+ and diagnosed with Fabry disease. 

Cathy Creed

Noah Schnieders

VX19-NEN-801 Vertex Pharmaceuticals Incorporated This is a clinical research study for individuals of African ancestry. If you have symptoms of kidney disease, or a family history of kidney disease, a clinical research study may be an option for you. Participation includes investigational genetic testing to see if you were born with the variation in your APOL1 gene that causes genetic APOL1-mediated nondiabetic chronic kidney disease (CKD) with an increased level of protein in your urine.
  • Length: 1-time visit
  • Time Commitment: 1 hour
  • Procedures: Blood draw and collection of saliva sample
  • Eligibility: If you are a patient of African ancestry with nondiabetic chronic kidney disease and a history of increased protein in your urine, you may be eligible
Jordan Haferbier
Amplitude VX21-147-301 Vertex Pharmaceuticals Incorporated People of recent African ancestry are more likely to have certain APOL1 variants and are more at risk for CKD. Currently, treatment for CKD exists only to control some aspects of the disease, such as high blood pressure. However, it is important to also treat the worsening of the kidney function as well as the underlying cause of CKD. VX-147 is being studied to determine if it can slow or stop the worsening of kidney function as well as target the underlying cause of this disease.
  • Length: Up to 4 years
  • Time Commitment: Each visit varies in duration
  • Procedures: Physical examination, vital signs, ECG, questionnaires, blood and urine tests
  • Eligibility: If you are a patient of African ancestry, aged 18-65, with nondiabetic chronic kidney disease and a history of increased protein in your urine, you may be eligible
More information about AMPLITUDE
Jordan Haferbier
LUPKYNIS Registry Aurinia Pharmaceuticals Inc. This is a registry for patients with Lupus Nephritis who are being treated with LUPKYNIS (Voclosporin). This registry is observational, which means that all data collected during this registry will be taken from the information that your doctor has recorded in your medical notes during your normal visits. You will not be asked to come into the clinic or have any other procedures done that are not part of your usual visits.
  • Length: 36 months
  • Time Commitment: Data will be obtained from medical record. 30 minutes or less phone call if additional information needed
  • Procedures: No additional procedures outside of routine clinic care
  • Eligibility: If you have been diagnosed with Lupus Nephritis and started on LUPKYNIS (Voclosporin) in the past 3 months, you may be eligible

More information about LUPKYNIS Registry

Cathy Creed

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

More information about Fabry Registry

Cathy Creed
Neptune National Institutes of Health, NIDDK, Nephcure Kidney International, University of Michigan The purpose of this multi-center, observational research study is to learn more about four diseases which cause nephrotic syndrome: Focal Segmental Glomerulosclerosis (FSGS), Minimal Change Disease (MCD), and Membranous Nephropathy (MN) and Alport syndrome. By collecting health information and laboratory samples from individuals who have these diseases and by making this information available to researchers, we hope to gain new knowledge about these diseases and to find better treatments for them.
  • Length: Participation lasts for 3 years. During the first year, there are 4 study visits. There are two study visits in year 2 and in year 3. When possible, study visits are scheduled to coincide with regularly scheduled clinic appointments.
  • Time commitment: approximately one hour per visit. Patients are seen at enrollment and at 4-6 month intervals. Visits are in-person and by telephone. When possible, study visits are scheduled to coincide with regularly scheduled clinic appointments.
  • Procedures: Blood and urine samples, kidney tissue (only if a biopsy is already being done) and various types of information are obtained from participants.
    Biospecimens are stored in biorepositories and are made available to researchers for approved research studies.
  • Eligibility: age 18 - 79, patients with Focal Segmental Glomerulosclerosis (FSGS), Minimal Change Disease, Membranous Nephropathy and Alport syndrome may be eligible

More information about Neptune

Cathy Creed


Nephrology Transplant Trials

Trial Name Sponsor Summary Details Study Coordinator
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 inhibitoreed19r (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.

More information about Cognitive Function-Everolimus

Sean O'Brien

Jessica Reed

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

More information about Cognitive Impairment

Sean O'Brien

Jessica Reed


General Nephrology Coordinators

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

Jordan Haferbier - Clinical research Coordinator
jhaferbier@kumc.edu
(913) 588-8983

Nephrology Transplant Coordinators

Jessica Reed
jreed19@kumc.edu
(913) 574-0894

Sean O'Brien
sobrien5@kumc.edu
(913) 574-0895

Clinical Research Assistants

Abigayle Joyce
ajoyce3@kumc.edu
(913) 574-3255

Noah Schnieders
nschnieders2@kumc.edu
(913) 588-6076

Internal Medicine

University of Kansas Medical Center
Internal Medicine
Nephrology & Hypertension Division
Mailstop 3018
3901 Rainbow Boulevard
Kansas City, KS 66160

Nephrology Fellowship
Transplant Fellowship

General Questions:
913-588-4852
Fellowship:
nephfellowship@kumc.edu