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Cystic Fibrosis Care and Treatment

Why Choose Treatment for Cystic Fibrosis (CF) at University of Colorado Hospital?

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Call (303) 398-1178 or (303) 398-1263 to request an appointment

Our Cystic Fibrosis Center is one of the largest in the United States, and is accredited by the CF Foundation.

We offer multidisciplinary care. Our program is comprehensive, and works closely with:

Through our affiliation with world-renowned National Jewish Medical and Research Center, the Colorado Adult Cystic Fibrosis Center has a nationwide referral base for the evaluation of individuals with mild forms of Cystic Fibrosis. Some of these cases remain unrecognized until adulthood. As the adult component of the University of Colorado CF Center, we are part of the National CF Therapeutic Development Network and are actively engaged in clinical trials of promising new treatments for CF.

What is Cystic Fibrosis?

Cystic fibrosis is the most common life-limiting genetic disorder in whites, affecting approximately 30,000 children and adults in the United States.

 

The disease causes production of abnormally thick, sticky mucus. This leads to increased lung infections and lung damage. This mucus also obstructs the pancreas, which prevents natural enzymes from helping the body break down and digest food.

 

Cystic fibrosis symptoms can include:

  • Skin that is salty-tasting
  • Persistent cough, often with phlegm
  • Recurrent lung infections
  • Shortness of breath, wheezing
  • Difficulty growing and gaining weight
  • Greasy, bulky stools, or difficult bowel movements.

Tests & Treatments

Tests for Cystic Fibrosis

  • Genetic Testing. Genetic testing is performed on adult patients suspected of having CF.
  • Sweat Tests. Sweat tests are performed at Children's Hospital Colorado, and can help confirm the results of genetic testing.

 

Cystic Fibrosis Treatments

  • Airway Clearing Techniques. Patients with cystic fibrosis lung disease perform airway clearing techniques to help loosen and clear mucus from the lungs. In childhood, this can involve a friend or family member pounding on the patient’s back. Adult patients use a variety of methods, including a mechanical vest that shakes them and allows them to clear the mucus.
  • Inhaled Medications. Inhaled medications are used to help clear the airways, and include the enzyme DNase or concentrated saline.
  • Antibiotics. Antibiotics are used both on a chronic basis to suppress infection, and during periods of pulmonary exacerbations.
  • Pancreatic Replacement Enzymes. Pancreatic replacement enzymes are required to allow CF patients with pancreatic damage to digest food properly.
  • Insulin. Insulin is required by many adults with CF.
  • Bronchodilators. Most CF patients have a degree of "asthma," and require bronchodilators to keep their airway as clear as possible.

Your Medical Team

The University of Colorado Hospital cystic fibrosis medical team is a multidisciplinary. All team members have special training and experience. Together, they provide the best care for CF patients.

 

Cystic Fibrosis Specialists

 

Pulmonologist – a board-certified medical doctor with special training in treating the lungs.

 

Registered nurse – graduated from a formal nursing education program and is licensed by the state of Colorado.

 

Respiratory therapist – provides specialized care to patients with breathing disorders or cardiovascular problems.

 

Other Cystic Fibrosis Staff

 

Nutritionists – health professionals with special training in nutrition. They help patients determine the best dietary choices for better health.

 

Genetics counselor – has a specialized graduate degree in genetic counseling, and provides information and support to people who are at-risk for genetic disorders.

 

Social workers – help individuals ensure their personal well being and provide the resources for people to get the help they need, by assessing all aspects of their life and culture.

Patient Education

Living with Cystic Fibrosis

Years ago, children with cystic fibrosis often did not live into their teens. Today, as a result of research and improved treatments, people with CF can live into their 30s and 40s, and often beyond.

 

It is important to receive care at an accredited CF Care Center, and to work with doctors and nurses who have special training and experience in caring for patients with cystic fibrosis. The CF team at UCH can develop the best treatment plan for you, and can help you to be in the best possible health. A healthy body is better able to fight disease progression and infections. With proper care, people with cystic fibrosis can lead active lives.

 

Getting a Second Opinion about Cystic Fibrosis

Cystic Fibrosis is a complex disorder, and methods of treatment are changing rapidly. If you have CF, or suspect you may have CF, The Colorado Adult CF Clinic can serve as a site to receive a second opinion, and will work with your Primary Care Provider to coordinate your care.

 

Cystic Fibrosis: Additional Resources

Cystic Fibrosis Foundation

Research

The Colorado Adult Cystic Fibrosis Program serves as a specialized center of clinical and investigative excellence.

 

We have a number of clinical trials to study new therapies, observational studies and translational protocols that may lead to better treatments in the future. Areas of scientific interest include:

  • Utilizing monocyte gene expression and circulating proteins as a biomarker of CF inflammation
  • Studies of airway and nasal epithelia cells
  • Sharing clinical samples with other investigators for pilot studies and hypothesis development

 

Ongoing Cystic Fibrosis Clinical Trials and Observational Studies

 

***Contact Marion Jones, (303) 398-1265, for more information on any of the cystic fibrosis studies listed below.

 

HS-2031 A Randomized, Double-blind Within Dose, Placebo-controlled Study To Investigate The Safety, Tolerability and Pharmacokinetics of Increasing Single And Multiple Doses (28-day dosing) of Tiotropium Bromide Administered Once Daily Via The Respimat Device in Cystic Fibrosis Patients (BI 205.338)

 

HS-2136 ALTU-135: A Phase III, Open-Label Clinical Study Evaluating the Long-Term Safety and Clinical Activity of ALTU-135 for the Treatment of Patients with Cystic Fibrosis-Related Exocrine Pancreatic Insufficiency.

 

A Randomized, Open-label, Multicenter, Phase 3 Trial to Assess the Safety of Tobramycin Inhalation Powder Compared to TOBI® in Cystic Fibrosis Subjects. Protocol Number: TIP003 A02

 

HS-2080 TOPIC: A Multicenter, Randomized, Double-Blind, Placebo-Controlled Trial of Pulmozyme Withdrawal On Exercise Tolerance in Cystic Fibrosis Subjects With Severe Lung Disease

 

HS-1683: Participation in a Cystic Fibrosis Patient Registry.

 

HS-2005CO: Project on Adult Care in Cystic Fibrosis

 

HS-1755: Improving Performance of CF Centers in the Detection and Management of Cystic Fibrosis-Related Diabetes Mellitus

 

A Phase 3, Double-Blind, Multicenter, Randomized, Placebo-Controlled Trial with Aztreonam Lysinate for Inhalation in Cystic Fibrosis Patients with Pulmonary P. aeruginosa Requiring Frequent Antibiotics (AIRCF2).

 

A Pilot Study to Evaluate the Effects of Sildenafil Citrate on Exercise Tolerance and Pulmonary Function in Moderate to Severe Cystic Fibrosis Lung Disease

  • 2005 – present
  • Scott Segal, MD

 

PTC124 for the Treatment of Nonsense-Mutation-Mediated Cystic Fibrosis

Adult Cystic Fibrosis Program

Through our national referral base, we have collected the oldest documented population of CF patients in the world. The Colorado Adult CF Program as extensive experience with milder forms of CF that are diagnosed in adulthood, and evaluating patients suspected of having cystic fibrosis.