Dr. med. Franziska Grundmann
Department II of Internal Medicine
University Hospital Cologne
Kerpener Str. 62
50937 Cologne, Germany
+49 221 478-4480
franziska.grundmann@uk-koeln.de
Prof. Dr. med. Lutz T. Weber
Children´s and Adolescents´Hospital
University Hospital Cologne
Kerpener Str. 62
50937 Cologne, Germany
+49 221 478-4319
lutz.weber@uk-koeln.de
Priv.-Doz. Dr. med. Jan Ulrich Becker
Institute of Pathology
University Hospital Cologne
Kerpener Str. 62
50937 Cologne, Germany
+49 221 478-98803
jan.becker@uk-koeln.de

Addresses of the institution:

University of Cologne
Institute of Pathology, University of Cologne
Pediatric Nephrology, Children's and Adolescents´ Hospital, University of Cologne
Department II of Internal Medicine, University of Cologne
University Hospital of Cologne
Kerpener Str. 62
50937 Cologne, Germany

Central project 3

MCD/FSGS registry and histopathological platform

Franziska Grundmann, Lutz Weber, Jan Becker

Central project CP3 is intended to create a registry for pediatric and adult patients which allows histopathological parameters to be linked with clinical information and biomaterials - the so-called FOrMe Registry (The German Focal Segmental Glomerulosclerosis and Minimal Change Disease Registry).

The primary goals of the FOrMe Registry are

  • Gaining insight into intracellular signaling pathways
  • Finding novel diagnostic markers for, eventually, targeted treatment
  • Generating new study ideas

Initially, this registry will be limited to the Cologne area (about 5 million inhabitants), but will go multi-centric after local initiation involving additional centers throughout Germany. This registry will be compatible with the established NEPTUNE (Nephrotic Syndrome Study Network) registry with respect to their operating procedures, structure, and data fields.

Virtual slides will be precisely annotated according to the NEPTUNE standard by an experienced nephropathologist after scanning and storing. Blood, tissue and urine samples will be stored in the Biobank of the Institute of Pathology (BioMaSOTA) of the University Hospital of Cologne. Genetic data and clinical data will be stored and made available through the tranSMART web-based user interface.

It is of major importance for the success of FOrMe that it will be a living registry with continuous support by the input of investigators, enabling scientific analyses in return. Any co-worker may request for scientific evaluations that are approved by a steering committee before data exchange. This open exchange with all co-workers within this resource to deliver data will be a real added value to the scientific community.

Tight collaboration of FOrMe with existing registries all over the world such as Hamburger Glomerulonephritis-Register, EURenOmics, PodoNet, Neptune, MWPNC, ChinaDiKip and others will boost podocyte research in Germany and internationally.

Inclusion Criteria (Pediatric)

  • Idiopathic nephrotic syndrome
  • Written informed consent of persons having care and custody of the child

Inclusion criteria (Adult)

  • All patients (age ≥ 18) with renal-biopsy proven FSGS or MCD