Adult Cystic Fibrosis Program

 

 

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. Nearly half of all patients with CF are now 18 years of age, or older.

National Jewish Health is the site of the University of Colorado Denver Adult Cystic Fibrosis Program. The Denver adult clinic is the largest CF center in the United States, following nearly 300 adults. We are part of the National Therapeutics Development Network (TDN), a network of nearly 80 CF clinical research centers dedicated to conducting clinical trials in order to evaluate the safety and effectiveness of new CF therapies.

 

Our Team

As CF is a multi-organ system disease affecting the lives of both the patient and his/her family, our CF team includes the following health care professionals:

  • Pulmonary Physicians
    • We have five CF physicians who are responsible for pulmonary care in both the outpatient clinic and in-patient management of adult patients with CF in Colorado and throughout the Mountain West. In addition to caring for patients, our physicians participate in laboratory research and direct both investigator-initiated clinical trials and those initiated through the CF TDN. Our physicians strive to provide optimal clinical care for our patients while conducting research that will increase our understanding of CF and improve the lives of our patients.
  • Nurse Coordinators
    • The Adult CF Program at National Jewish Health has two 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.
  • Respiratory Therapist
    • At least one respiratory therapist is available at all clinic visits. RTs are responsible for the following:
  • Registered Dietitian
    • 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 an adult CF patient personalize nutrition-related goals to his or her 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 Worker
    • 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
  • Research Coordinators
    • We have two research nurses who prepare Institutional Review Board (IRB) submissions for new research studies, including research study protocol summaries, consent forms, assent forms and required IRB forms, as well as protocol amendments, safety updates, and serious adverse events. These studies are part of the CF TDN or investigator-initiated by our physicians.

We welcome the opportunity to work with patients and primary care physicians in Colorado and throughout the Mountain West.  

 

Related Program

 

Contact Information
Adult Cystic Fibrosis Program
National Jewish Health
1400 Jackson St.
Denver, CO 80206

Clinical Nurse Coordinators: 303.398.1263 or 303.398.1178
Dietary/Nutrition: 303.270.2330
Social Work: 303.270.2333
Respiratory: 303.398.1677

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