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 Eye Drops in the Treatment of Cystinosis – an Australian Perspective

By Branko Radojkovic

Year: 2015

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A New Gel Formulation of Topical Cysteamine for the Treatment of Corneal Cysteine Crystals in Cystinosis: the Cystadrops OCT-1 Study

By Labbé A, Baudouin C, Deschênes G, Loirat C, Charbit M, Guest G, Niaudet P

Year: 2014

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That Eagle Covering Me: Transitioning and Connected Autonomy for Emerging Adults with Cystinosis

By Maya Doyle, Allison Werner-Lin

Year: 2014

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Dietary Considerations for Infantile Nephropathic Cystinosis

By Kelly Rulle

Year: 2013

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The NIH Clinical Research Nurses’s Poster ‘Cystinosis – Model of Care’ won first place at the International Conference of Clinical Research Nurses

By Ann Peterson, Katie Sarsfield, Celia Ryder

Year: 2012

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Raptor – A Randomized Controlled Crossover Trial

By C.B. Langman, D. Matossian, L.A. Greenbaum, M. Sarwal, P.C. Grimm, P.R. Niaudet, G. Deschenes, D. Marin, E. Cornelissen, P. Cochat, S. Gaillard, M.J. Bogger, P. Rioux

Year: 2012

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