Common Elements in Rare Kidney Diseases: Conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference

Ségolène Aymé, Detlef Bockenhauer, 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, Conference Participants

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

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 languageEnglish
Pages (from-to)796-808
Number of pages13
JournalKidney International
Volume92
Issue number4
DOIs
Publication statusPublished - 1 Oct 2017

Cite this

Aymé, S., Bockenhauer, D., Day, S., Devuyst, O., Guay-Woodford, L. M., Ingelfinger, J. R., ... Conference Participants (2017). Common Elements in Rare Kidney Diseases: Conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference. Kidney International, 92(4), 796-808. https://doi.org/10.1016/j.kint.2017.06.018