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Get Free AccessRare kidney diseases encompass at least 150 different conditions, most of which are inherited. Although individual rare kidney diseases raise specific issues, as a group these rare diseases can have overlapping challenges in diagnosis and treatment. These challenges include small numbers of affected patients, unidentified causes of disease, lack of biomarkers for monitoring disease progression, and need for complex care. To address common clinical and patient issues among rare kidney diseases, the KDIGO Controversies Conference entitled, Common Elements in Rare Kidney Diseases, brought together a panel of multidisciplinary clinical providers and patient advocates to address five central issues for rare kidney diseases. These issues encompassed diagnostic challenges, management of kidney functional decline and progression of chronic kidney disease, challenges in clinical study design, translation of advances in research to clinical care, and provision of practical and integrated patient support. Thus, by a process of consensus, guidance for addressing these challenges was developed and is presented here.
Ségolène Aymé, Detlef Böckenhauer, Simon Day, Olivier Devuyst, Lisa M. Guay‐Woodford, Julie R. Ingelfinger, Jon B. Klein, Nine V.A.M. Knoers, Ronald D. Perrone, Julia Roberts, Franz Schaefer, Vicente E. Torres, Michael Cheung, David C. Wheeler, Wolfgang C. Winkelmayer, Aris Angelis, Corinne Antignac, Kyongtae T. Bae, Carsten Bergmann, Anthony J. Bleyer, Marjolein Bos, Klemens Budde, Katherine R. Bull, Dominique Chauveau, Avital Cnaan, Martina C. Cornel, Etienne Cosyns, Jane de la Fosse, Jie Ding, Susie Gear, Timothy H.J. Goodship, Paul Goodyer, Oliver Groß, Nicole Harr, Peter C. Harris, Tess Harris, Julia Höfele, Marie C. Hogan, Ewout J. Hoorn, Shigeo Horie, Clifford E. Kashtan, Larissa Kerecuk, Robert Kleta, Martin Konrad, Craig B. Langman, Segundo Mariz, Gayle McKerracher, Annet Nieuwenhoven, Dwight Odland, Eric Olinger, Alberto Ortíz, York Pei, Yves Pirson, Brian Rayner, Giuseppe Remuzzi, Daniel Renault, Rémi Salomon, Aude Servais, Richard J. Smith, Neveen A. Soliman, Bénédicte Stengel, Marjolein Storm, Roser Torrá, William van’t Hoff, Rosa Vargas‐Poussou, Elizabeth Vroom, Christoph Wanner, Hui‐Kim Yap (2017). Common Elements in Rare Kidney Diseases: Conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference. , 92(4), DOI: https://doi.org/10.1016/j.kint.2017.06.018.
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Type
Article
Year
2017
Authors
68
Datasets
0
Total Files
0
Language
en
DOI
https://doi.org/10.1016/j.kint.2017.06.018
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