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000142063 1001_ $$aKönig, Jens Christian$$b0
000142063 245__ $$aNetwork for Early Onset Cystic Kidney Diseases-A Comprehensive Multidisciplinary Approach to Hereditary Cystic Kidney Diseases in Childhood.
000142063 260__ $$aLausanne$$bFrontiers Media$$c2018
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000142063 520__ $$aHereditary cystic kidney diseases comprise a complex group of genetic disorders representing one of the most common causes of end-stage renal failure in childhood. The main representatives are autosomal recessive polycystic kidney disease, nephronophthisis, Bardet-Biedl syndrome, and hepatocyte nuclear factor-1beta nephropathy. Within the last years, genetic efforts have brought tremendous progress for the molecular understanding of hereditary cystic kidney diseases identifying more than 70 genes. Yet, genetic heterogeneity, phenotypic variability, a lack of reliable genotype-phenotype correlations and the absence of disease-specific biomarkers remain major challenges for physicians treating children with cystic kidney diseases. To tackle these challenges comprehensive scientific approaches are urgently needed that match the ongoing 'revolution' in genetics and molecular biology with an improved efficacy of clinical data collection. Network for early onset cystic kidney diseases (NEOCYST) is a multidisciplinary, multicenter collaborative combining a detailed collection of clinical data with translational scientific approaches addressing the genetic, molecular, and functional background of hereditary cystic kidney diseases. Consisting of seven work packages, including an international registry as well as a biobank, NEOCYST is not only dedicated to current scientific questions, but also provides a platform for longitudinal clinical surveillance and provides precious sources for high-quality research projects and future clinical trials. Funded by the German Federal Government, the NEOCYST collaborative started in February 2016. Here, we would like to introduce the rationale, design, and objectives of the network followed by a short overview on the current state of progress.
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000142063 7001_ $$aTitieni, Andrea$$b1
000142063 7001_ $$aKonrad, Martin$$b2
000142063 7001_ $$aConsortium, NEOCYST$$b3$$eCollaboration Author
000142063 7001_ $$aBergmann, C.$$b4
000142063 7001_ $$aCetiner, M.$$b5
000142063 7001_ $$aDrube, J.$$b6
000142063 7001_ $$aGimpel, C.$$b7
000142063 7001_ $$aGöbel, J.$$b8
000142063 7001_ $$aHaffner, D.$$b9
000142063 7001_ $$aIllig, T.$$b10
000142063 7001_ $$aKlopp, N.$$b11
000142063 7001_ $$aKönig, J.$$b12
000142063 7001_ $$aKonrad, M.$$b13
000142063 7001_ $$0P:(DE-He78)e4ad7b4e684492de43cfcb12e5397439$$aLablans, M.$$b14$$udkfz
000142063 7001_ $$aLiebau, M. C.$$b15
000142063 7001_ $$aLienkamp, S.$$b16
000142063 7001_ $$aOkorn, C.$$b17
000142063 7001_ $$aOmran, H.$$b18
000142063 7001_ $$aPape, L.$$b19
000142063 7001_ $$aPennekamp, P.$$b20
000142063 7001_ $$aSchaefer, F.$$b21
000142063 7001_ $$aSchermer, B.$$b22
000142063 7001_ $$aStorf, H.$$b23
000142063 7001_ $$aTitieni, A.$$b24
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000142063 7001_ $$aWeber, S.$$b26
000142063 7001_ $$aZiegler, W.$$b27
000142063 773__ $$0PERI:(DE-600)2711999-3$$a10.3389/fped.2018.00024$$gVol. 6, p. 24$$p24$$tFrontiers in Pediatrics$$v6$$x2296-2360$$y2018
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