National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Focal segmental glomerulosclerosis


Other Names:
FSGS; Glomerulosclerosis, focal; Segmental glomerulosclerosis; FSGS; Glomerulosclerosis, focal; Segmental glomerulosclerosis; Focal sclerosis with hyalinosis; Familial idiopathic nephrotic syndrome; Familial idiopathic steroid-resistant nephrotic syndrome See More
Categories:
Focal segmental glomerulosclerosis (FSGS) is a type of kidney disorder. It is characterized by scar tissue that forms in some of the glomeruli in the kidney.[1] FSGS may cause non-specific signs and symptoms, including protein in the urine, elevated levels of creatinine, and swelling.[2][3] In many cases the cause of FSGS can not be determined. Some cases are thought to be associated with congenital kidney defects, urine backing up into the kidneys, obesity, obstructive sleep apnea, sickle cell anemia, or viruses (e.g., HIV).[3]  The goal of treatment is to control symptoms and prevent chronic kidney failure.[1] Even with treatment, many people with FSGS progress to kidney failure within 5 to 20 years.[1]
Last updated: 11/4/2015

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

  • ClinicalTrials.gov lists trials that are related to Focal segmental glomerulosclerosis. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

    Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.
  • The Research Portfolio Online Reporting Tool (RePORT) provides access to reports, data, and analyses of research activities at the National Institutes of Health (NIH), including information on NIH expenditures and the results of NIH-supported research. Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. To search for studies, enter the disease name in the "Text Search" box. Then click "Submit Query".

Patient Registry

  • The Nephrotic Syndrome Rare Disease Clinical Research Network (NEPTUNE) is a team of doctors, nurses, research coordinators, and research labs throughout the U.S., working together to improve the lives of people with focal and segmental glomerulosclerosis, minimal change disease, membranous nephropathy, and nephrotic syndrome, other or unspecified caused, through research. The Nephrotic Syndrome Rare Disease Clinical Research Network (NEPTUNE) has a registry for patients who wish to be contacted about clinical research opportunities.

    For more information on the registry see: https://neptune-study.org/get-involved/

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

Organizations Providing General Support

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

In-Depth Information

  • Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
  • MeSH® (Medical Subject Headings) is a terminology tool used by the National Library of Medicine. Click on the link to view information on this topic.
  • The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
  • The Online Mendelian Inheritance in Man (OMIM) is a catalog of human genes and genetic disorders. Each entry has a summary of related medical articles. It is meant for health care professionals and researchers. OMIM is maintained by Johns Hopkins University School of Medicine. 
  • Online Mendelian Inheritance in Man (OMIM) lists the subtypes and associated genes for Focal segmental glomerulosclerosis in a table called Phenotypic Series. Each entry in OMIM includes a summary of related medical articles. It is meant for health care professionals and researchers. OMIM is maintained by Johns Hopkins University School of Medicine.
  • PubMed is a searchable database of medical literature and lists journal articles that discuss Focal segmental glomerulosclerosis. Click on the link to view a sample search on this topic.

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

  • Does protein S deficiency have anything to do with FSGS? My doctor can not find a cause for my FSGS. See answer


  1. Focal segmental glomerulosclerosis. MedlinePlus. October 21, 2015; http://www.nlm.nih.gov/medlineplus/ency/article/000478.htm. Accessed 11/4/2015.
  2. Glomerular diseases. National Kidney & Urologic Diseases Information Clearinghouse. April 2, 2014; http://kidney.niddk.nih.gov/kudiseases/pubs/glomerular/. Accessed 11/4/2015.
  3. Focal segmental glomerulosclerosis (FSGS). UNC Kidney Center Web site. http://unckidneycenter.org/kidney-health-library/glomerular-disease/focal-segmental-glomerulosclerosis-fsgs. Accessed 11/4/2015.