P1 – CENTRAL COORDINATION

Participating Centers

University of Münster

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University Hospital Münster,

Clinic for Pediatric and Adolescent Medicine, Pediatric Nephrology

Director: Prof. Dr. Heymut Omran

Primary Tasks and Objectives

Coordination and implementation of the NEOCYST Projects
Initiation and administration of the NEOCYST internet platform
Summary and publication of new research
Central Study Office
Organization of regular study Meetings
Organization of regular patient meetings

Leading Investigators

	Dr. med. Jens König Consultant Pediatric Nephrology, University Hospital Münster NEOCYST – Principal investigator Coordination of all NEOCYST Projects Jens König is a pediatric nephrologist and works as a consultant at the Department of Pediatrics at the University Hospital of Münster. The scientific focus of Jens König lies on cystic kidney diseases of the childhood with a special expertise on nephronophthisis (NPH) and NPH related ciliopathies (NPH-RC). To this end he established and heads a prospective national registry on NPH and related ciliopathies (www.nephreg.de) and was able to collect clinical and genetic data on more than 150 patients so far. This clinical registry functions as a core feature of the newly established NEOCYST registry study. Within the NEOCYST consortium Jens König is responsible for the central coordination of the consortium and has the lead of subproject P1.
	Prof. Dr. med. Martin Konrad *Director Pediatric Nephrology, University Hospital Münster* NEOCYST – Principal investigator Prof. M. Konrad and his group built up a research unit integrating clinical, genetic and physiologic research activities dealing with inherited renal tubular disorders. They identified several gene defects (TRPM6, digenic CLCNKA/B mutations, CLDN19, CYP24A1) and established clear-cut genotype/phenotype correlations. From 1996-2000, these studies were carried out by a European Consortium for Bartter syndrome. The group of Dr. Konrad has collected one of the largest patient cohorts worldwide (>500 patients) as a basis for successful continuation of this approach. Together, the Münster group has set-up a web-based patient registry for nephronophthisis and related disorders with the official support of the GPN in 2011 (www.nephreg.de), which harbours 131 patients at the Moment.
	Prof. Dr. med. Heymut Omran Director General Pediatrics, University Hospital Münster Heymut Omran is the Director of the Department of General Pediatrics of the University Hospital Muenster. His lab is working on the molecular pathogenesis of cilia dysfunction (ciliopathies)). He was active in the identification and characterization of several genes responsible for pediatric renal diseases and initiated the Nephronophtisis Registry. His scientific achievements are acknowledged with several awards such as the Eva Luise Köhler Research Prize for Rare Diseases and the Hans Bloemendal Medal for Groundbreaking Studies on Ciliopathies. Heymut Omran is Member of the Leopoldina National Academy of Sciences and the North Rhine Westphalian Academy of Sciences and Arts.
	Mareike Dahmer-Heath Research Officer, University Hospital Münster NEOCYST – Consortium Manager
	Sabine Kollmann Study Nurse, University Hospital Münster Assistance Central Study Office