| October 30, 2009 | Media contact: Margarita Bauza E-mail: mbauza@med.umich.edu Phone: 734-764-2220 |
U-M Cystic Fibrosis Center makes great strides, receives national award
Center is leader in clinical research and treatment, with long history of innovation
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ANN ARBOR, Mich. - People with cystic fibrosis can expect to live a longer life despite the genetic, life-threatening disease, because of advances made at the University of Michigan Health System.
Great strides have been made in the care of individuals with cystic fibrosis, or CF, a disease that impairs the proper functioning of vital organs. Much of this progress has been made at the UMHS, where patients’ life expectancy has doubled and patient numbers have increased significantly since the Cystic Fibrosis Center opened in the 1970s.
This month, the UMHS’s Cystic Fibrosis Center received national recognition from the Cystic Fibrosis Foundation, an award that recognizes innovations in treatment, data collection, and innovation in quality of patient care and both clinical and basic research.
The center employs eight pediatric lung specialists and a large staff of social workers, dieticians, physical therapists and nurses, who treat about 500 patients a year, 60 percent of whom are children.
Considered a pediatric disease in the 1980s because patients rarely lived past childhood, life expectancy for cystic fibrosis patients has surpassed 40 years.
“We want cystic fibrosis kids to be as normal as can be,” says Samya Nasr, M.D., director of U-M’s CF care center. “We want them to take part in normal activities -- the goal is to have quality of life, participate in sports, to be quarterbacks and running backs. We want them to have no limitations.
“We are aggressive in taking care of kids,” she adds. “We have a lot of initiatives in research, in multi-center studies, in improving the adherence of patients.”
Researchers associated with the center are newsmakers in their own right.
Francis S. Collins, M.D., Ph.D., who is currently serving as National Institutes of Health director, was a faculty member at the University of Michigan in Ann Arbor 20 years ago, where he co-discovered the gene responsible for cystic fibrosis.
John LiPuma, M.D., professor of pediatrics at the U-M Medical School, and a consortium of U-M scientists recently found that a nanoemulsion developed at U-M by James Baker, M.D., is effective in killing bacteria that infect CF patients and that are highly resistant to currently available antibiotics. This is a potential major breakthrough in the treatment of cystic fibrosis. LiPuma co-chaired the annual North American Cystic Fibrosis Conference held in Minneapolis this month. There, he received the Richard C. Talamo Distinguished Clinical Achievement Award from the CF Foundation.
Since 2007, Nasr has served as director for newborn screening for cystic fibrosis in the state by the Centers for Disease Control and the Cystic Fibrosis Foundation. She was chosen to develop a statewide program to test all newborns for cystic fibrosis.
A tremendous amount of research is taking place at UMHS, one reason the center received Cystic Fibrosis Foundation recognition.
The U-M pediatric and adult cystic fibrosis care centers are conducting clinical research activities in patients of all ages, from infancy to adulthood. Some address growing evidence that early intervention is important to delay or prevent irreversible lung disease. Some examples of research include:
- One ongoing trial studies the efficacy and safety of hypertonic saline in children ages 4 months to 5 years. Hypertonic saline improves poor mucus clearance, and hydrates the airways. In clinical trials in CF patients 6 and older, the solution decreased the rate of pulmonary exacerbations, improved lung function and improved quality of life. It’s the first clinical trial that will use infant lung function testing as an outcome for the youngest patients. This study is sponsored jointly by the Cystic Fibrosis Foundation and the National Institutes of Health.
- Another study for young children, Pulmozyme in Preschoolers, studies the effect of Pulmozyme in 3- to 5-year-old children with cystic fibrosis. Pulmozyme helps break down mucus in the airways to make it easier to clear. It has been shown to reduce pulmonary exacerbations and improve lung function in older children and adults with CF.
According to the Cystic Fibrosis Foundation, its award recognizes the center for:
- Actively using clinical outcomes data to identify opportunities for improvement and document results of improvement efforts.
- Aligning improvement efforts to result in measurable improvement in clinical outcomes.
- Involving patients and families in identifying, designing or implementing improvement efforts.
- Employing innovative strategies to improve care processes and outcomes.
For more information about the Cystic Fibrosis Foundation visit http://cff.org. For information about the UMHS Cystic Fibrosis Center and its research, visit http://www2.med.umich.edu/healthcenters//clinic_detail.cfm?service_id=1111&um_unit_id= or call 734-764-4123.
For more information on cystic fibrosis,
For more information on ongoing studies at the Cystic Fibrosis Center, visit
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