Publications & Guides

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This is a collection of some of the most important cystinosis publications and education and treatment guides from around the world. It is not, however, exhaustive. You can search for abstracts and articles with specific topics of interest using PubMedGoogle ScholarNational Library of Medicine, or Springer. As of 2018, there are over 1,440 articles relating to cystinosis. Many articles are free, but others have a cost to download.

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Cysteamine Treatment

Year: 2013

Cysteamine: an Old Drug with New Potential

By Martine Besouw, Rosalinde Masereeuw, Lambert van den Heuvel, Elena Levtchenko

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Cysteamine Treatment

Year: 2012

Halitosis in Cystinosis Patients After Administration of Immediate-release Cysteamine Bitartrate Compared to Delayed-release Cysteamine Bitartrate

By Martine Besouw, Albert Tangerman, Elisabeth Cornelissen, Patrice Rioux, Elena Levtchenko

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Cysteamine Treatment

Year: 2012

Cysteamine Therapy Delays the Progression of Nephropathic Cystinosis in Late Adolescents and Adults

By Albane Brodin-Sartorius, Marie-Josèphe Tête, Patrick Niaude, Corinne Antignac, Geneviève Guest, Chris Ottolenghi, Marina Charbit, Dominique Moyse, Christophe Legendre, Philippe Lesavre, Pierre Cochat, Aude Servais

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Cysteamine Treatment

Year: 2013

Pharmacokinetic Studies of Cysteamine Bitartrate

By Ranjan Dohil, Patrice Rioux

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Cysteamine Treatment

Year: 2010

Twice-Daily Cysteamine Bitartrate Therapy for Children with Cystinosis

By Ranjan Dohil, Meredith Fidler, Jon A. Gangoiti, Frederick Kaskel, Jerry A. Schneider, Bruce A. Barshop

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Cysteamine Treatment

Year: 2010

Long-Term Treatment of Cystinosis in Children with Twice-Daily Cysteamine

By Ranjan Dohil Jon A. Gangoiti, Betty L. Cabrera, Meredith Fidler, Jerry A. Schneider, Bruce A. Barshop

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Cystinosis Overview

Year: 2018

Infantile Nephropathic Cystinosis in Sulaimani Pediatric Teaching Hospital: A Retrospective Cohort Study

By Hunar Jamal Hussein, Khalid Hama Salih, Adnan Mohammed Hasan

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Cystinosis Overview

Year: 2017

Ophthalmology Cystinosis Forum

By Rachel J. Bishop, Katharina Hohenfellner, Hong Liang

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Cystinosis Overview

Year: 2017

Endocrine Complications of Cystinosis

By Elena Levtchenko

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Cystinosis Overview

Year: 2017

Neurocognitive Complications of Cystinosis

By Doris Trauner

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Cystinosis Overview

Year: 2017

Myopathy and Less Frequent Complications of Cystinosis

By Jess G. Thoene

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Cystinosis Overview

Year: 2017

Pulmonary Complications of Cystinosis

By Richard H. Simon

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Cystinosis Overview

Year: 2017

Conclusions to the Supplement, “Extra-Renal Complications of Cystinosis”

By Jess G. Thoene

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Cystinosis Overview

Year: 2017

Oxygen Use for Individuals with Cystinosis with Severe Muscle Weakness

By Richard H. Simon, Susan E. Thomas

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Cystinosis Overview

Year: 2016

KDIGO Cystinosis Conference Report

By Craig B. Langman, Bruce A. Barshop, Georges Descheˆnes, Francesco Emma , Paul Goodyer, Graham Lipkin, Julian P. Midgley, Chris Ottolenghi, Aude Servais, Neveen A. Soliman, Jess G. Thoene, Elena N. Levtchenko

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Cystinosis Overview

Year: 2016

Information for General Practitioners about Cystinosis

By Elena Levtchenko, Marlies Cornelissen, Mirian Janssen

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Cystinosis Overview

Year: 2016

Introduction to “Extra-Renal Complications of Cystinosis”

By Jess G. Thoene

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Cystinosis Overview

Year: 2016

Ocular Complications of Infantile Nephropathic Cystinosis

By Rachel J. Bishop

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Cystinosis Overview

Year: 2016

Bone Complications of Cystinosis

By Craig B. Langman

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Cystinosis Overview

Year: 2016

Cystinosis: a review

By Mohamed A. Elmonem; Koenraad R. Veys; Neveen A. Soliman; Maria van Dyck; Lambertus P. van den Heuvel; Elena Levtchenko

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Cystinosis Overview

Year: 2015

Cystinosis Transition Management Tool

By Frederick Kaskel, Rachel Bishop, Ranjan Dohil, Maya Doyle, Ewa Elenberg, Paul Goodyer, Larry Greenbaum, Christine Knerr Elena Levtchenko, Joseph Mahgerefteh, Roslyn B. Mannon, Lorrie Moreno, Galina Nesterova, Richard H. Simon, Mihir M. Thacker, Doris Trauner

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Nephrology System

Year: 2015

Nephropathic Cystinosis: Diagnosis, Management, and Challenges in Long-term Treatment

By Larry A. Greenbaum

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Cystinosis Overview

Year: 2014

Nephropathic Cystinosis: an International Consensus Document

By Francesco Emma , Galina Nesterova , Craig Langman , Antoine Labbé, Stephanie Cherqui , Paul Goodyer , Mirian C. Janssen , Marcella Greco , Rezan Topaloglu , Ewa Elenberg, Ranjan Dohil, Doris Trauner, Corinne Antignac, Pierre Cochat, Frederick Kaskel, Aude Servais, Elke Wühl, Patrick Niaudet, William Van’t Hoff, William Gahl, Elena Levtchenko

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Nephrology System

Year: 2014

The Proximal Tubule in Cystinosis: Fight or Flight?

By Robert L. Chevalier

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Cystinosis Overview

Year: 2014

Improving the Prognosis of Nephropathic Cystinosis

By Martine TP Besouw, Elena N Levtchenko

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Cysteamine Treatment

Year: 2014

Quality of Life is Improved and Kidney Function Preserved in Patients with Nephropathic Cystinosis Treated for 2 Years with Delayed-Release Cysteamine Bitartrate

By Craig B. Langman, Larry A. Greenbaum, Paul Grimm, Minnie Sarwal, Patrick Niaudet, Georges Deschenes, Elisabeth A. M. Cornelissen, Denis Morin, Pierre Cochat, Ewa Elenberg, Christian Hanna, Segolene Gaillard, Mary Jo Bagger, Patrice Rioux

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Cystinosis Overview

Year: 2013

Cystinosis Research Network – a Patient Advocacy Group

By Jose Morales

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Cysteamine Treatment

Year: 2014

Cystinosis: Renal Glomerular and Renal Tubular Function in Relation to Compliance with Cystine-depleting Therapy

By Galina Nesterova, Caitlyn Williams, Isa Bernardini, William A. Gahl

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Cysteamine Treatment

Year: 2012

A Randomized Controlled Crossover Trial with Delayed-Release Cysteamine Bitartrate in Nephropathic Cystinosis: Effectiveness on White Blood Cell Cystine Levels and Comparison of Safety

By Craig B. Langman, Larry A. Greenbaum, Minnie Sarwal, Paul Grimm, Patrick Niaudet, Georges Descheˆnes, Elisabeth Cornelissen, Denis Morin, Pierre Cochat, Debora Matossian, Segolene Gaillard, Mary Jo Bagger, Patrice Rioux

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Cystinosis Overview

Year: 2012

Infantile Nephropathic Cystinosis – Standards of Care

By Galina Nesterova, William A. Gahl

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