In the first half of 2008, the Collaborative Studies Coordinating Center was awarded two nation-wide patient registries which aim to dramatically simplify the gathering of patient data, among other benefits. Maintaining registries is new to the Center, so these opportunities provide a chance to develop fresh data harvesting and management techniques. “We are very excited to add registry study design and coordination to the repertoire of CSCC capabilities,” says Center Director, Dr. Lisa LaVange.
The Bronchiectasis Research Registry was awarded in late 2007 by the Chronic Obstructive Pulmonary Disease (COPD) Foundation. The goal of the registry is to aggregate data on patients diagnosed with non-cystic fibrosis bronchiectasis, a progressive, non-curable disease of the lungs which afflicts thousands of people in the US. Centralizing patient information into a common registry will assist in the planning of future multi-center clinical trials. The registry will also be used to provide better insight into the diagnosis of the etiology of the different types of bronchiectasis, as well as the pathophysiology of the disorder.
There are presently 11 registry sites scattered across the country, one site being UNC’s own SchoolofMedicine , headed by Dr. Michael Knowles. Patient enrollment began in early 2008. The Principal Investigator for this project is Dr. Lisa LaVange, CSCC Director and Professor of the Practice in Biostatistics. Visit their website at http://www.cscc.unc.edu/bron/ for more information.
The second registry was awarded in mid-2008 by the National Multiple Sclerosis Society requiring the CSCC to function as the Data Coordination and Analysis Center (DCAC) for the Pediatric MS Centers of Excellence Network. The DCAC will develop a data management system for a consolidated database for the Network and will help investigators analyze data. The DCAC will also collaborate with Network investigators on designing, seeking funding for, and conducting research studies into causes of and treatments for pediatric-onset multiple sclerosis. David Couper, Ph.D., Research Associate Professor in the Department of Biostatistics and CSCC Deputy Director, will lead the DCAC.
The National MS Society helps each person address the challenges of living with MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward. Further information about the National MS Society is available on its website at http://www.nationalmssociety.org/ .