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Abstract: INFO28

FOrMe – The German Focal Segmental Glomerulosclerosis and Minimal Change Disease Registry

Session Information

  • Informational Posters
    October 25, 2018 | Location: Exhibit Hall, San Diego Convention Center
    Abstract Time: 10:00 AM - 12:00 PM

Category:

  • No subcategory defined

Authors

  • Volker, Linus A., Nephrolab Cologne, Cologne, NW, Germany
  • Ehren, Rasmus JC, University Hospital of Cologne, Cologne, Germany
  • Grundmann, Franziska, University of Cologne, Cologne, Germany
  • Becker, Jan U., University Hospital Cologne, Cologne, Germany
  • Benzing, Thomas, University of Cologne, Cologne, Germany
  • Weber, Lutz Thorsten, University Hospital of Cologne, Cologne, Germany
  • Brinkkoetter, Paul T., University Hospital Cologne, Cologne, Germany
Description

Minimal change disease (MCD) and focal segmental glomerulosclerosis (FSGS) are leading causes of nephrotic syndrome and associated with a relevant risk for the development of chronic renal insufficiency and end-stage renal failure. Incidences and prevalences vary significantly among Western countries. Within the German population, both MCD with an incidence of 3.2 per million population and FSGS with an incidence of 11.2, both entities are classified as rare diseases. There is a lack of systematic, large-scale, randomized intervention studies. Within the framework of the DFG-funded Clinical Research Unit CRU 329 "Molecular Mechanisms of Podocytic Diseases - Nephrology on the Way to Precision Medicine", the FOrMe registry (The German Focal Segmental Glomerulosclerosis and Minimal Change Disease Registry) is intended to create a nationwideregistry for pediatric and adult patients collecting 150 pediatric and 350 adult MCD and FSGS cases within the next 10 years. Within the registry, labochemical and clinical anamnestic parameters are linked with histopathological findings. Clinical data is collected systematically at inclusion and throughout the course of disease. Biological patient samples such as urine, serum, plasma or renal biopsies are conserved and cataloged within the BioMaSOTA biobank already established at the University of Cologne, Germany. In the future, the FOrMe registry as the central and largest German MCD / FSGS registry will enable a translational approach to review the results of basic molecular research using precisely characterized human biomaterials and to develop long-term new diagnostic and therapeutic approaches.

Funding

  • German Research Foundation (DFG)