The Cystic Fibrosis Centers provide integrated, multidisciplinary care for children and adults with Cystic Fibrosis and their families, including promoting normal growth and development, slowing the progression of cystic fibrosis disease and preventing/ treating complications.
What is Cystic Fibrosis?
Cystic fibrosis (CF) is a genetically inherited disease of the secretory glands that primarily affects the lungs, digestive system, and the pancreas of about 30,000 children and adults living in the United States. CF is caused by a mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene. Normally this gene makes a protein that facilitates the regulated transport of salt and water in and out of human cells. In contrast, the CF gene produces thick, sticky secretions (mucous) in the respiratory and digestive tracts, as well as in the reproductive system. Additionally, this process causes a measurable increase in salt excreted in sweat.
Accumulation of mucous can build up in the lungs of individuals with CF. This buildup makes it easy for bacteria to grow and can lead to recurring lung infections. This thick, sticky mucus can also block tubes, or ducts, in the pancreas. As a result, digestive enzymes that are produced by the pancreas cannot reach the small intestine. These enzymes normally help in the process of digestion. Without these enzymes, the intestines cannot adequately absorb fats and proteins.
Pediatric Cystic Fibrosis
The Unterberg Children's Hospital at Monmouth Medical Center
The Comprehensive Cystic Fibrosis Center is the oldest and largest of the centers in New Jersey, offering patient care, teaching and research. The center — which includes both pediatric and adult programs — is accredited by the National Cystic Fibrosis Foundation and is designated by the State of New Jersey as a referral center for Cystic Fibrosis Newborn Screening. Patient care is provided by a multidisciplinary team of specialists trained in cystic fibrosis care. Monnmouth's Cystic Fibrosis Center has been designated as a Therapeutic Development Center by the Cystic Fibrosis Foundation's Therapeutic Development Network. Clinical trials of new therapies for cystic fibrosis are offered as a result of the center being a part of the Cystic Fibrosis Foundation's Research Network. A team of trained research clinicians oversee the multiple trials offered at Monmouth's Cystic Fibrosis Center.
Saint Barnabas Medical Center
The Cystic Fibrosis Center is a fully accredited affiliate of the Cystic Fibrosis Foundation, a non-profit organization dedicated to funding research to find a cure for Cystic Fibrosis and improving the quality of life for people with the disease. Attending an accredited center ensures quality of care. The Cystic Fibrosis Foundation has established care guidelines used by accredited centers and provides regular updates regarding new research funding. Our center follows the Cystic Fibrosis Foundation treatment guidelines for all of our patients. With the availability of advanced medical therapies and diagnostic technology, cystic fibrosis patients are living longer and healthier lives. Our program provides specialized care for children and adults in one convenient location. For more than 20 years, our goal has been to ensure that at each stage of life our patients have access to comprehensive treatment and the latest research to help them maintain a healthy and active lifestyle.
With earlier interventions and improved childhood therapies, cystic fibrosis is no longer considered solely a pediatric disease. Accordingly, our multi-disciplinary team is dedicated to the specialized care of adult patients. We address concerns involving balancing CF treatments with work and family life and specialized family planning. The entire team works towards supporting our adult patients regarding these very important issues. The adult program also addresses the needs of the newly diagnosed adult patient. The proper diagnosis and medical issues regarding a later diagnosis are aptly addressed.
Because adult patients have their own unique issues, our health care team includes a pulmonologist who specializes in the care of adults with Cystic Fibrosis. Our team works closely to ensure our patients have an easy, gradual transition which meets their maturing medical and lifestyle needs. In fact, routine care and procedures continue to be performed at The Adult Cystic Fibrosis Center. This is good news as research shows that maintaining a continuity of care from a pediatric to an adult program helps produce better patient outcomes.
Adult programs are available at Saint Barnabas Medical Center and Monmouth Medical Center.
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