CINRG: Infrastructure for Clinical Trials in Duchenne Dystrophy
Abstract
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.
Document Details
- Document Type
- Technical Report
- Publication Date
- Sep 01, 2012
- Accession Number
- ADA567633
Entities
People
- Avital Cnaan