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About the Study

Researchers are conducting a clinical research study to find out how many people with chronic kidney disease (CKD) have a genetic form of the disease caused by a change in a gene called the apolipoprotein L1, or APOL1, gene. Current treatments for CKD caused by variations in the APOL1 gene do not treat the genetic cause of this disease, and even with these treatments, people who have APOL1 genetic variations often end up having kidney failure.

This clinical research study will require a single study visit where blood and saliva samples will be collected to determine if participants have changes in the APOL1 gene. This can be done at a study site or in your home. If you choose to participate, the results of this investigational genetic test may qualify you for a future clinical research study where researchers will be testing an investigational medication that may help treat people with CKD caused by changes in the APOL1 gene.

To learn more about the blood and saliva sample collection, DNA (genetic) testing, and genotyping that will take place as part of this study, please watch the video.

Eligibility criteria.

Changes in the APOL1 gene began more than 10,000 years ago in sub-Saharan Africa. Some people don’t know their ancestors and may not know if they have the APOL1 variation – we are currently enrolling people who may be of African ancestry and are between the ages of 12 and 65 years old to participate in investigational genetic testing for the APOL1 gene. Potential participants must meet the following criteria:

  • Are between the ages of 12 and 65 years old
  • Have been diagnosed with focal segmental glomerulosclerosis (FSGS) or another form of CKD with an increased level of protein in their urine, and no other identifiable cause of kidney disease, including diabetes
    • Individuals (including but not limited to a first-degree blood relative to an individual with end-stage kidney disease [ESKD]) without a CKD diagnosis may also be considered for participation
  • Willing and able to comply with the testing requirements

Those who qualify will receive APOL1 investigational genetic testing at no cost. If you qualify, you may be compensated for your study-related time and reimbursed for travel.

Study participation.

This study consists of one visit that can take place at home or at the study site. At this visit, the study doctor and their team will take samples of blood and saliva from study volunteers to see if they were born with a variation in their APOL1 gene that is related to CKD. Those who qualify will receive this investigational testing at no cost, and the results of this test may qualify participants for a future clinical research study exploring treatment options for people with CKD.

See if you may qualify