KUMC FSHD Family Day - Multidisciplinary Panel скачать в хорошем качестве

KUMC FSHD Family Day - Multidisciplinary Panel

The 2020 FSHD Family Day was hosted by the University of Kansas Medical Center (UKMC), Department of Neurology, and Jeffrey M. Statland, M.D. in partnership with the FSHD Society. KUMC is an integral part of the FSHD Clinical Trial Research Network (CTRN) In this session, we hear from several clinical care providers in an open forum discussion. About the FSHD CTRN The Facioscapulohumeral Muscular Dystrophy Clinical Trial Research Network (FSHD CTRN) is a consortium of fifteen academic research centers (12 in the United States, and 3 in Europe) with expertise in FSHD clinical research, or in conducting neuromuscular clinical trials. About Jeffrey M. Statland, M.D. Dr. Statland is an associate professor of neurology at the University of Kansas Medical Center in Kansas City, Kansas. His research background has centered primarily on describing the natural history of and response to therapy for neuromuscular diseases. He completed a neuromuscular fellowship in Experimental Therapeutics of Neurological Diseases at the University of Rochester Medical Center, and currently serves as principal investigator or co-investigator for research studies in Facioscapulohumeral Muscular Dystrophy (FSHD), Duchenne Muscular Dystrophy, Spinal Muscular Atrophy, and Myotonic Dystrophy. His specific research interest over the last 6 years has been preparing for clinical trials in FSHD. He has systematically analyzed performance of strength and functional outcomes in prior FSHD clinical trials and compared to performance in a natural history study. He has worked with collaborators to develop new disease-relevant outcome measures to assess patient-reported disease burden, functional impairment, and physiological changes in muscle. He has obtained pilot data on the use of a number of novel outcomes for FSHD, including electrical impedance myography, a disease specific functional rating scale, and a wireless motion analysis system in FSHD. www.kumc.edu kumc.edu/fshd/about-the-fshd-ctrn.html