Research for Rare - Research for rare diseases

STOP-FSGS - Speed Translation-Oriented Progress to Treat FSGS

What is a Focal Segmental Glomerulosclerosis?

Primary (idiopathic) FSGS is a rare disease of the kidney, affecting an estimated 2,000 people in Germany. Distinguishing between the primary and the far more common secondary form is often difficult, but very important with regard to therapy.

With FSGS, the filtration units of the kidney, the so-called glomeruli, are affected. If left untreated, damage to the filter cells can ultimately result in loss of kidney function, even requiring dialysis.

The sometimes completely different triggering damage mechanisms of the disease are still insufficiently understood and there is a lack of individualized therapy approaches.

Joint research in the STOP-FSGS network

The STOP-FSGS research network is a consortium of German FSGS experts and funded by the German Federal Ministry of Education and Research (BMBF) since 2016. The consortium is working on deciphering the molecular basis as well as developing new diagnostic and therapeutic approaches for the treatment of that kidney disease. Previous work in the last two funding periods has helped to further decipher the underlying mechanisms by identifying new disease-causing genes, biomarkers and signaling pathways.

The goal of the network in the third funding period is to systematically combine the identified disease mechanisms, biomarkers and therapeutic approaches, to develop them further and to translate them into improved diagnostics and therapy for patients. In addition, STOP-FSGS will be a central information, contact and exchange platform for physicians, scientists and patients for FSGS in Germany.

The STOP-FSGS consortium offers the opportunity to further develop diagnostics, early detection and therapy in the coming years for those affected by FSGS.

Coordinating investigator:

Prof. Dr. med. Tobias B. Huber
Universitätsklinikum Hamburg-Eppendorf
III. Medizinische Klinik und Poliklinik
Nephrologie, Rheumatologie, Endokrinologie und Diabetologie
Martinistraße 52, 20246 Hamburg
Tel.: 040 7410-53908
Fax: 040 7410-4518640

Prof. Dr. Nicole Endlich und PD Dr. Maja Lindenmeyer


Research on Rare Diseases in Germany – Using small fish and super-resolution microscopy to track down a rare disease – Journal of Health Monitoring 4/2023

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