Cystic Fibrosis Information for Parents

What is Cystic Fibrosis?

Cystic fibrosis (CF) is an inherited disease that causes glands throughout the body to make abnormally thick, sticky mucus. The most frequently affected organs include the lungs and pancreas. The intestines, liver, sweat glands and reproductive organs also may be affected.

About 30,000 people in the United States are affected with the disease, and about 1,000 babies are born with it each year. Cystic fibrosis is a complicated illness that requires clinical care by a physician or other health care professional. More information about cystic fibrosis can be found on the following sites.

UPMC Children’s Hospital Child Health Library 

Infection Control

UPMC Children's Hospital of Pittsburgh’s Cystic Fibrosis (CF) Center has established guidelines for controlling the spread of infection in clinic and in the hospital for the protection of our cystic fibrosis patients. Please review these guidelines at the link below:

Infection Control Guidelines

Additional information about infection control is available through the Cystic Fibrosis Foundation.

For questions or more information, please contact Children’s CF Center at 412-692-5630.

Quality Improvement Initiative

The Cystic Fibrosis Foundation (CFF) is committed to providing every Cystic Fibrosis Foundation–accredited care center throughout the United States with the opportunity to improve the quality of care delivered to patients with Cystic Fibrosis (CF) and their families. A standardized training program is being offered to assist centers in looking at how their center can accelerate the rate of improvement in CF care. The Cystic Fibrosis Center at UPMC Children’s Hospital applied to and was accepted to be part of the 5th CFF Learning and Leadership Collaborative, and spent two days in 2007 learning with experts in quality improvement in Baltimore.

Children’s CF Center has developed a Quality Improvement (QI) Lead Team for our pediatric and adult programs. The team consists of representatives from each of the disciplines including administration, physicians, nurses, dietitians, respiratory therapists and social workers as well as parents. The mission of the Center’s QI Lead Team is to improve outcomes by assessing operations and developing goals and projects. Often QI projects are based on data from the CF Center annual report and the CFF.

A Note Regarding Refills

Insurance coverage may dictate pharmacy providers. A reminder when you call to request refills, remember to give yourself ample time so that you do not run out of medication. We recommend a two-week turnaround, as many insurances companies now require prior authorization for many medications.

Additional Resources

Cystic Fibrosis Foundation

The mission of the Cystic Fibrosis Foundation, a nonprofit donor-supported organization, is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. 

Muriel's Breath of Life

A nonprofit, family-led initiative administered in partnership with Children's Hospital of Pittsburgh Foundation, Muriel’s Breath of Life raises funds that directly benefit children and adults with cystic fibrosis who are under the care of the Antonio J. and Janet Palumbo Cystic Fibrosis Center at UPMC Children's Hospital of Pittsburgh and UPMC's Comprehensive Lung Center.


Flu Shots

Ask your primary care doctor or cystic fibrosis team about getting immunized against influenza. Vaccines usually are available in September.

Clinic Relocation

Dear Families of the Antonio J. and Janet Palumbo Cystic Fibrosis Center:

We are writing to inform you of changes we are making to our CF Clinic which are aimed at improving our level of care and service going forward. Starting in July of this year, we are starting annual Comprehensive Care Visits at our Main Campus Clinic location in Pittsburgh, to assure that every patient has access to our full complement of services, including:

  • Team-based visits with your CF physician, nurse, social worker, nutritionist, and respiratory therapist all present
  • Consultation with our new CF pharmacist, who can assist with medication strategies, monitoring and management of side effects, and troubleshooting issues with outpatient and specialty pharmacies
  • Access to more advanced lung function testing, including lung volume measurements, lung clearance measurement, and exercise testing
  • Consultation with our exercise specialist regarding fitness assessment and strategies
  • Facilitation of annual lab work, diabetes screening, bone density scans and other testing
  • Availability of our CF research coordinators to keep you informed of available research treatments and studies
  • Coordination of visits with other specialists at the hospital

To facilitate the flow of these visits and to allow optimal infection control practices, we are moving the CF clinic out of the general pulmonary clinic in the 3rd floor Cow Pod to the 6th floor of the hospital alongside the Pulmonary Function Laboratory. You can expect to see your usual CF physician or nurse practitioner at this site, and you will continue to see the same provider at the satellite locations for your remaining routine care visits for the year. With the new Annual Comprehensive Care Visits and associated new services, we are aiming to raise our standard of care at our Center, and in turn see further improvements in your/your child’s health. We will welcome your feedback and suggestions as we move forward with these changes.

We understand that change can be difficult, but with this move, we hope to increase care coordination with other specialties, increase access to our entire multidisciplinary team, and reduce time spent at satellite appointments. We look forward to working together with you through this process and greatly appreciate your feedback.

Daniel Weiner, MD
Director, Antonio J. and Janet Palumbo Cystic Fibrosis Center

Mark Dovey, MD
Associate Director, Antonio J. and Janet Palumbo Cystic Fibrosis Center

Janice Matisko, RN
Andrea Dickerson, RN
Program Coordinators, Antonio J. and Janet Palumbo Cystic Fibrosis Center