Sparsentan TVTX-RE021-20TravereA 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

Debbie Griffin

Jordan Haferbier

SirusNovartisA 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.

Debbie Griffin

Abigail Joyce

SPK- Fabry Fabry 001Spark TherapeuticsA 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-10002-101Spark TherapeuticsA 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-801Vertex Pharmaceuticals IncorporatedThis 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

Debbie Griffin

Amplitude VX21-147-301Vertex Pharmaceuticals IncorporatedPeople 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

Debbie Griffin

LUPKYNIS RegistryAurinia 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 RegistryGenzymeCollection 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 CreedNeptuneNational Institutes of Health, NIDDK, Nephcure Kidney International, University of MichiganThe 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