August 2012 Research Update

A major focus of the Cystinosis Research Network continues to be a determined effort to secure a promising future for the cystinosis community through the sup-port and funding of research grants that lead to improved treatments and ultimately a cure for cystinosis. CRN has a current research commitment of over $800,000.00 and has funded nearly $3 million total in research grants and fellowships.

Current Research Studies:

Neveen Soliman, MD and Elena Levtchenko, MD, PhD, Center of Pediatric Nephrology and Transplantation, Cairo University, Egypt and Department of Pediatric Nephrology University Hospitals, Leuven, Belgium, “Genotype-Phenotype in Egyp-tian Patients with Nephropathic Cystinosis”, Grant awarded March 2012 for a 12 month period. Total award: $15,750.

Martine Besouw, MD, Department of Women and Child Laboratory of Pediatrics, University Hospitals, Leuven Belgium, "Study of skin changes in cystinosis patients under cysteamine therapy”, Mentor: Elena Levtchenko, MD, PhD. Grant awarded 6 December 2011 for a 12 month period. Total Award: $99,400.00. This grant is a joint funding collaboration between Cystinosis Research Network and Cystinosis Foundation Ireland.

Maya Doyle, LCSW, Children's Hospital at Montefiore, Division of Pediatric Nephrology, New York University, “Cystinosis in Emerging Adulthood”. A one-time grant awarded on 24 July 2011 for a total of $17,200.

Jess G. Thoene, M.D, Director, Biochemical Genetics Laboratory, Active Professor Emeritus of Pediatrics, University of Michigan, “Continuation of Feasibility of Cystinosin Replacement Therapy in Cystinosis”, Grant awarded 24 July 2011 for an 18 month period for $202,500.00.

Rosaleen Anderson, PhD, Sunderland Pharmacy School, University of Sunderland, "Proteomic investigation of cystinotic cells and the effects of cysteamine treatment". Grant awarded: 23 November 2010 for a term of 2 years in the amount of GPB 80,926.00 or $130,366.00 based on the exchange rate for 15 November 2010.

Catherine Tuleu, Ph.D, Ken Nischal, Olufemi Rabiu, Rajnish Sekhri, William Van’t Hoff, Univ. of London, School of Pharmacy; “Development of cysteamine in situ gelling system for the topical treatment of corneal crystals in cystinosis”, Grant awarded January 2007 for 3 years. Total award: 103,000.00 pounds or approximately $203,500.00.

Leticia Belmont, M.D, Unidad de Genetica de la Nutrician, Instituto Nacional de Pediatria, Mexico. “Determination of Intraleucocitary Cystine by High Performance Liquid Cromatography (HPLC) in Patients with Cystinosis”. Grant Awarded: 5 November 2008 Total award: $31,972.00; A presentation, citing CRN funding, was given at the IPNA mee-ting in NYC, 31 August 2010.

Henk J. Blom, M.D., M.M.C. Wamelink, and E. Levtchenko, M.D., VU University Medi-cal Center, Amsterdam, The Netherlands: “Newborn Screening of Cystinosis”. Grant Awarded: 5 November 2008; Total Award: 45,000 euros (approximately $67,500.00.

Francisco Emma, M.D. and Anna Taranta, Ph.D., Bambino Gesu Children’s Hospital and Research Institute, Rome, Italy: “Functional Characterization of Cystinosin LKG”. Grant Awarded: 5 November 2008; Total Award: $114,480.00.

Ewa Elenberg, M.D., Texas Children's Hospital, Houston, TX "Quality of Life in Cystinosis Patients", Grant awarded 9-25-09 for 1 year . Total award: $21,000.00

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