Our instruments are available for use in clinical research and patient monitoring. The Myotonic Dystrophy Health Index (MDHI) was specifically designed to support FDA labeling claims and is capable of serially measuring myotonic dystrophy type-1 overall health and 17 additional important aspects of myotonic dystrophy symptomatic health. Standard scores (and standard deviations) for this instrument are available based on age, CTG repeat length, duration of symptoms, and gender. It has been validated in a wide range of myotonic dystrophy patients across the United States. The instrument and its 17 subscales have an optimal test-retest reliability and the MDHI has been shown to be highly responsive in detecting clinically important change in the DM1 population.
Licensing opportunities for the MDHI and other disease-specific instruments including those for facioscapulohumeral muscular dystrophy (FSHD), congenital muscular dystrophy, childhood muscular dystrophy, juvenile muscular dystrophy, Charcot-Marie-Tooth disease, spinal muscular atrophy, and myotonic dystrophy type-2 are available through the Office of Technology Transfer (OTT) at the University of Rochester Medical Center (URMC) - http://www.rochester.edu/ventures/
Or at: http://rochester.technologypublisher.com/technology/12222
Researchers or parties interested in utilizing this disease-specific, custom-designed, patient reported outcome measure in current or planned clinical research may also contact Zubair Mirza at the URMC OTT (Omar_Bakht@urmc.rochester.edu - 585.276.6600), for additional information.