CINRG: Infrastructure for Clinical Trials in Duchenne Dystrophy
Final rept. 14 Aug 2011-13 Aug 2012
CHILDREN'S RESEARCH INST WASHINGTON DC
Pagination or Media Count:
Duchenne muscular dystrophy DMD is a rare disease occurring in 1 of 3,500 live born males worldwide. The Cooperative International Neuromuscular Research Group CINRG is a consortium of medical and scientific investigators from academic and research centers sharing a common goal of improving the quality of life of neuromuscular disease patients by cooperative planning, implementation, analysis and reporting of controlled clinical studies and of other research for neuromuscular disease. In order to support CINRG in its efforts to perform the highest quality of research, a Coordinating Center CC is required to coordinate efforts and protocols, standardize methods of clinical trial treatment administration and assessments, as well as data collection and quality assurance, and analyses of data. The goal of this project is to provide the CINRG clinical research network with an infrastructure for operational support to conduct its studies, database and data management support for collection of data from CINRG studies, specific support in training clinical evaluators CEs for muscle strength and biostatistical support for study design, assessment of feasibility and analysis of study results, as well as supporting new grant submissions. The CINRG CC will provide a centralized administrative and technical infrastructure to meet the complex needs of the program that is supportive of CINRG s scientific agenda.
- Anatomy and Physiology
- Medicine and Medical Research