An observational study in Focal Segmental Glomerulosclerosis, Nephrotic Syndrome and End Stage Renal Disease, sponsored by Beth Israel Deaconess Medical Center. Active, not recruiting at 1 site in United States. Per ClinicalTrials.gov, last updated 2026-06-11.
Sponsored by Beth Israel Deaconess Medical Center · Observational
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.
The investigators welcome anyone (with or without a family history) with unexplained, non syndromic FSGS, nephrotic syndrome, or proteinuria to join the study. Participation involves a saliva (or blood if it is preferable) sample and urine sample (if applicable). There is no cost to participate and the study can be done from home in most cases.
98 studies on the registry are indexed under Glomerulosclerosis, Focal Segmental; 31 are open to participants now.
This study's planned enrollment of 2,050 is above the median of 135 across 26 observational studies indexed under Glomerulosclerosis, Focal Segmental.
Browse Glomerulosclerosis, Focal Segmental studies →Beth Israel Deaconess Medical Center is the lead sponsor of 560 studies on the registry; 80 are open to participants now.
Of its 75 completed or terminated interventional studies of FDA-regulated products, 61 (81%) have results posted.
Counted across the registry records on this site, refreshed daily.
We are recruiting subjects who have kidney disease, family members of a person with kidney disease, and healthy controls.
Exclusion Criteria:
To identify the genetic causes of FSGS, NS, and idiopathic proteinuria/ESRD in patients and families
This is an ongoing study for research purposes only.
Time frame: 2035
Plan to share: No
This study is active, not recruiting, as verified in Jun 2026. You cannot join it, but the record below documents what was studied.
Get an email when the registry record changes — status, dates, results — or when someone posts here.
Sign in to followQuestions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.
Sign in to join the discussion. Reading takes no account; posting does. You choose a display name, and a pseudonym is the default.
Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.
Glomerulosclerosis, Focal Segmental→
Beth Israel Deaconess Medical Center