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Elsa Shapiro

Scientific Advisor at Phoenix Nest

For many years, Dr. Elsa Shapiro specialized in research at the University of Minnesota into numerous neurodegenerative diseases, including metabolic diseases.  Over the years she has concentrated her research on the brain outcomes of various neurodegenerative diseases in children. She is particularly interested in the relationship of neuroimaging to cognitive outcomes in the developing child. Currently, she is a semi-retired research consultant to the NIH-supported Lysosomal Disease Network (headquartered at the University of Minnesota), which funds and oversees more than 20 research studies of various lysosomal diseases. She was the original Principal Investigator of the ground-breaking multicenter study “Longitudinal Studies of Brain Structure and Function in MPS Disorders,” examining longitudinal changes in quantitative neuroimaging, neuropsychological markers, quality of life, and biomarkers in more than 100 children around the country with MPS I, II, and VI. The current Principal Investigator of this ongoing study is Chester B. Whitley, Ph.D., M.D., who is also the Principal Investigator of the Lysosomal Disease Network. “Longitudinal Studies of Brain Structure and Function in MPS Disorders” is funded by the NIH, Genzyme Corporation and ShireHGT, as well as the National MPS Society and The Ryan Foundation. In addition, Dr. Shapiro has been co-investigator on ShireHGT studies of the natural history of MPS IIIA and MPS IIIB, studying the cognitive and MRI changes over time to identify sensitive outcome measures that might be needed for treatment trials. In summary, her interests lie in exploring the areas of childhood dementia and cognitive impairment using a variety of tools such as quantitative neuroimaging and neuropsychology to study diseases and conditions that affect the central nervous system. In this era of development of new treatments, identifying assessment methods that are sensitive to treatment outcomes is crucial to the identification of effective new treatments.


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