Although this was an observational study, not a randomized clinical trial, Dr. Bangalore notes that its results are consistent with a general trend in New York clinical registry studies. (sciencedaily.com)
«STS public reporting uses detailed clinical registry data and outcomes that have been risk adjusted, meaning that the results take into account the condition of the patient at the time of surgery and whether or not there were other health problems, such as diabetes.» (sciencedaily.com)
Utilising the RDRF, we have deployed national and international patient - driven and clinical registries including: the Myotubular and Centronuclear Myopathy Patient Registry, the Global Angelman Syndrome Registry, the Familial Hypercholesterolaemia Australasia Network Registry, and the Australian and New Zealand Neuromuscular Disorders Registries (Duchenne Muscular Dystrophy, Spinal Muscular Atrophy, and Myotonic Dystrophy Registries). (rd-connect.eu)