Two West Virginia University faculty members have been selected to serve on a national consortium that is looking at patient adherence to treatments for cystic fibrosis.
Several months ago, the Cystic Fibrosis Foundation began a search for leaders in the adherence field of cystic fibrosis research to put together a group of clinicians and researchers from around the United States to share resources and collaborate on cystic fibrosis research.
Christina Duncan, associate professor of psychology, and Tricia Dubin, M.D., pediatric pulmonologist at The Mountain State Cystic Fibrosis Center at WVU Hospitals have been selected to serve on the consortium.
Treatment for cystic fibrosis has improved vastly over the past 20 years, but comes at a considerable cost of time. Now, the average cystic fibrosis patient who is healthy will spend anywhere from one to two hours a day on their healthcare regimen.
As more care and time is necessary to keep patients healthy, adherence becomes increasingly important.
Cystic fibrosis is a disease passed down through families that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. Though patients now live to a median life expectancy of about 38 years, it is a life-shortening disease.
As part of the consortium, a group of 20 cystic fibrosis centers across the country will meet twice each year in Bethesda, Maryland, to identify, develop, and implement initiatives for research intended to translate quickly to patient care, specifically targeting patient adherence to medical regimens.
The consortium is divided into three groups:
• Partnering with other CFF Committees group: Identify and establish networking connections for the consortium
• Protocol development & review group: Responsible for establishing the research protocol review process.
• Dissemination group: Develop plans and procedures for bridging the research outcomes with patient care
Its first meeting was on Sept. 16.
“We’ve made these significant medical care advances, but what has happened is that the burden for treatment has increased dramatically with those advances. That (advance) comes with considerable time spent following their regimen,” Duncan said.
The Mountain State Cystic Fibrosis Center on the Health Sciences campus at WVU has more than a decade of experience caring for children with the debilitating disease. Its leading-edge research combined with its team approach results in the highest lung function for children with cystic fibrosis in the state.
For more information, contact Christina Duncan at (304) 293-1289 or Christina.Duncan@mail.wvu.edu.
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