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Improved treatment for children with cystic fibrosis (CF) and better diagnostic testing for adults with unusual expressions of CF have steadily increased the number of adults who need specialized care for this disease. More than half of all patients with CF are now 18 years of age, or older.
As the largest adult cystic fibrosis center in the United States, National Jewish Health provides ongoing treatment for more than 400 adults. We also have 25 ongoing clinical trials that evaluate the safety and effectiveness of new CF therapies and are part of the Cystic Fibrosis Therapeutics Development Network (TDN).
When Libby and Sam Pelican were born, doctors thought they would probably die before their 18th birthdays. Thanks to comprehensive, advanced care they received at National Jewish Heath, both ladies have thrived. In 2012, as they neared their 30s, they started their own families. National Jewish Health has the largest adult cystic fibrosis program in the nation.
National Jewish Health
1400 Jackson St.
Denver, CO 80206
Clinic days: Monday, Wednesday, Thursday (morning only)
Saint Joseph Hospital
1375 E. 19th Ave.
Denver, CO 80218
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Cystic Fibrosis (CF) is a multi-organ system disease affecting the lives of both the patient and his/her family. Patients travel from across the United States to receive treatment from our highly specialized team.
National Jewish Health has five pulmonologists and one nurse practitioner who specialize in working with adult cystic fibrosis patients. These physicians also participate in laboratory research and direct both investigator-initiated clinical trials and those initiated through the Cystic Fibrosis Therapeutics Development Network (TDN). Our goal is to provide the highest level of clinical care while conducting research that improves our understanding of CF and the lives of our patients.
The Adult CF Program has three nurse coordinators who organize clinic and schedule patients, necessary procedures, follow-up clinic visits and hospital admissions. They coordinate care between patients and physicians, endocrinologist, dietitian, social worker and respiratory therapist. In addition, they take care of insurance precertification for clinic visits, laboratory procedures and hospital admissions.
At least one respiratory therapist is available at all clinic visits. RTs are responsible for the following:
A registered dietitian (RD) is available to help CF patients optimize their nutritional status. When a person's nutrition status is better, so is his or her lung function. The RD's goal is to help adult CF patients personalize nutrition-related goals to their own lifestyle. Nutrition visits include discussing the following:
Social workers in the CF team have an important role to play in helping patients and their families cope more effectively with the inevitable stress of having a chronic illness. By acting as an advocate for patients, social work assessments guide CF patients toward the following:
Our research coordinators are available at every clinic to discuss with you potential opportunities to participate in clinical trials. We are a site in the Cystic Fibrosis Therapeutics Development Network (TDN), and offer access to clinical trials for therapies still under investigation, as well as observational studies and studies that seek to identify new biomarkers of disease severity. The research coordinators also are available by phone at 303.270.2517 to discuss if you may be eligible for a trial. If you are enrolled in a trial, they manage all aspects of the study visits, which are conducted in the Clinical Research Unit.
Beginning August 4, 2014, Cystic Fibrosis patients needing hospitalization will be admitted to Saint Joseph Hospital.
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1400 Jackson St Denver, CO 80206 1.877.225.5654 Network of Locations Contact Us
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