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:
- Pulmonary function tests (PFTs)
- Sputum induction
- Education on airway clearance techniques (ACTs)
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:
- Personalizing weight goals
- Achieving optimal vitamin and mineral levels
- Accessing nutrition support programs
- Optimizing pancreatic enzyme dosing
- Pregnancy and lactation
- Bone health
- CF-related diabetes
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:
- Income support
- Housing resources
- Education/college grants
- Help with employment
- Liaison with other agencies
- Financial and benefit advice and how to apply for disability
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.