Genetic Causes of FSGS, Nephrotic Syndrome, or Kidney Failure (NCT02194582) | Clinical Trial Compass
Active — Not RecruitingNot Applicable
Genetic Causes of FSGS, Nephrotic Syndrome, or Kidney Failure
United States2,050 participantsStarted 1996-06
Plain-language summary
The investigators are trying to learn more about the cause of kidney diseases such as Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic syndrome by studying genetics. The investigators are interested in discovering which genes play a role in causing a predisposition to FSGS/NS. The investigators also want to learn why FSGS/NS can run in families. Participation in our study involves a saliva sample and a urine sample that you can give from home. There is no cost to participate. All information is kept private and confidential. The investigators also like to include healthy volunteers (parents, spouses) if interested/available but of course this is completely optional.
Who can participate
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion Criteria:
* Subjects with FSGS (focal segmental glomerulosclerosis)
* Subjects with NS (nephrotic syndrome)
* Subjects with unexplained kidney failure (have had a transplant or on dialysis)
* Subjects with unexplained proteinuria
* Family members of a person with FSGS, NS, kidney failure, or unexplained protein in their urine
* Healthy volunteers
Exclusion Criteria:
* Patients whose kidney disease is already explained by another syndrome such as (Branchio Oto Renal Syndrome or Alports syndrome)
* Patients who already know the genetic cause of their kidney disease
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Since this study is focused on finding genetic causes of FSGS, nephrotic syndrome, or unexplained kidney failure, could my specific diagnosis fit what the researchers are looking for, and is it worth discussing with the study team even though they're no longer actively recruiting?
2This trial is in a 'not recruiting' phase right now — does that mean there's a waiting list, or are there similar genetic research studies still enrolling that might give me the same kind of information about whether my condition has a hereditary cause?
3If genetic testing through this study did identify a cause for my kidney disease, how would that actually change my treatment plan or help my family members who might also be at risk?
4Since this is listed as a genetic research study rather than a treatment trial, what are the practical implications of participating — for example, would I learn my own results, and how might that information affect things like insurance coverage?
5Are there standard genetic tests available outside of a research study that my care team could order now to look for known causes of FSGS or nephrotic syndrome, rather than waiting to see if I could join a research study?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
To identify the genetic causes of FSGS, NS, and idiopathic proteinuria/ESRD in patients and families