CINRG Overview

History

The Cooperative International Neuromuscular Research Group was founded in 1999 as the Clinical Research Arm of the Duchenne Muscular Dystrophy Research Center and the Research Center for Genetic Medicine at the Children's National Medical Center in Washington DC. It started, and remains, a multi-disciplinary and cross-institutional network of clinicians and scientists with the shared goal of wanting to positively impact the lives of neuromuscular disorder patients and their families. Today, CINRG is a global, state-of-the-art clinical research network, with over 20 sites, that has conducted many studies and has access to over 4,000 neuromuscular patients. The primary goal of CINRG is to study the cause(s), pathogenesis and clinical outcomes of neuromuscular disorders and to conduct well-controlled clinical studies that examine promising, therapeutic interventions that may improve quality of life or extend life for patients. The CINRG Coordinating Center is located at the Children's National Medical Center in Washington, DC.

State-of-the-Art

As a leading research group in neuromuscular disorders, CINRG utilizes state of the art technologies to ensure data security, accuracy, reporting and storage. We are continually updating our systems and integrating new technologies to ensure that researchers in the network focus on conducting studies and informing patients of the latest developments. CINRG uses OpenClinica by Akaza Research, LLC as the electronic data capture (EDC) and database system. OpenClinica is an open source, web-based data entry system utilizing a high security environment with flexibility to accommodate all types and sizes of studies and is 21 CFR Part 11 compliant.

Global Perspective

CINRG is an international organization and is committed to achieving intercultural exchange, education, and training of staff associated with running clinical studies. We believe in a consistent and high standard of care for all patients. While the major focus of CINRG is to conduct clinical studies to improve patient quality of life, we recognize that quality of life can also be improved through education, physical therapy, rehabilitation medicine, and other clinical and emotional support systems for patients and their families. Towards this end, CINRG members embrace dissemination of tools and knowledge both within the group, and to the world-wide neuromuscular community at large. CINRG participates in the global NMD research community and frequently presents at international symposia and meetings. Additionally CINRG has a Memorandum of Understanding with TREAT-NMD to further international cooperation and facilitate global interactions in neuromuscular disorder research.

CINRG Sites

For a list of all CINRG sites around the world with the contact information for each site please click here.

CINRG Organizational Chart