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Rare 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.

Original publication

DOI

10.1016/j.kint.2017.06.018

Type

Conference paper

Publication Date

10/2017

Volume

92

Pages

796 - 808

Addresses

Institut du Cerveau et de la Moelle Épinière, Centre National de la Recherche Scientifique Unite Mixte de Recherche 7225, Institut National de la Santé et de la Recherche Médicale U 1127, Université Pierre et Marie Curie-P6 Unite Mixte de Recherche S 1127, Paris, France.

Keywords

Conference Participants, Kidney, Humans, Kidney Diseases, Disease Progression, Rare Diseases, Glomerular Filtration Rate, Prevalence, Interdisciplinary Communication, Consensus, Nephrology, Patient Care Team, Congresses as Topic, Practice Guidelines as Topic, Biomarkers, Nephrologists