Responsible Centers

	University Hospital Heidelberg – Clinic for Pediatric and Adolescent Medicine
	University Hospital Freiburg – Clinic for Pediatric and Adolescent Medicine

Primary Tasks and Objectives

The overarching aim of this subproject is to expedite the translation of research insights obtained inside and outside the consortium into clinical practice and to harmonize the management of cystic kidney diseases by developing clinical practice guidelines, position papers, standard operating procedures and/or workflow algorithms.

To this end, the Standards of Care Committee (SoCC) comprising NEOCYST participants and external experts from the professional society work groups (e.g. ESPN and ERA-EDTA Rare Kidney Disease working groups) works on 4 such papers. The Committee is led by Prof. Franz Schaefer, head of the Department of pediatric nephrology at the University Children’s Hospital Heidelberg, and assisted Dr. Charlotte Gimpel from the University Children’s Hospital Freiburg.

The Standards of Care group firstly defines areas and topics in need of standardization. It then systematically collects relevant information by formal literature reviews, by interrogation of the Neocyst database, and by surveying current practices in the pediatric nephrology community at large utilizing online questionnaires in order to evaluate it in workshops. To ensure the broadest possible consensus, the SoCC applies evidence based medicine techniques and works in close collaboration with relevant national and international professional societies as well as patient advocacy groups.

Leading Investigators

Prof. Dr. med. Franz Schaefer University Hospital Heidelberg – Clinic for Pediatric and Adolescent Medicine Head Pediatric Nephrology Head of “KfH-Nierenzentrums für Kinder und Jugendliche” The Heidelberg group, headed by F. Schaefer, has a long-standing track record in epidemiological and pharmacological research in pediatric kidney diseases, as well as in the genetic exploration of rare kidney disorders. F.Schaefer founded and directs the International Pediatric Dialysis Network (IPDN) Registries and the international registry for steroid resistant nephrotic syndrome (PodoNet), and currently coordinates of the ESPN/ERA-EDTA registry for pediatric renal replacement therapy. Together with M.Liebau he recently initiated the ARegPKD registry for ARPKD as a collaborative project of the ESCAPE Network and the GPN. Dr. Schaefer contributed to numerous clinical practice guideline projects, in which he gained thorough expertise in the application of evidence based medicine techniques.

Dr. med. Charlotte Gimpel University Hospital Freiburg – Clinic for Pediatric and Adolescent Medicine Specialist in Pediatric Nephrology