What patients and families need to know
Cystic Fibrosis Center
The Cystic Fibrosis (CF) Center at Children's National offers a multidisciplinary team of specialists who see to all aspects of care for inpatients and outpatients with CF.
We are a Level III CF center and a Cystic Fibrosis Foundation-designated care center – the only one in the immediate Washington, D.C., area. CF care centers are part of a nationwide network of CF providers who meet the highest standards in expert clinical care and support for CF patients and their families.
Our specialists provide patients with the most advanced care and help families learn about home management of CF. The team includes pediatric and adult pulmonary physicians experienced in the management of patients with CF and related specialists in CF:
- CF nurse specialists
- Family nurse practitioner
- Physical therapist
- Pulmonary function technicians
- Respiratory therapists
- Social worker
Each year, the center sponsors a formal CF Family Education Day that includes lectures and hands-on teaching sessions on a variety of topics related to CF care, research and psychosocial issues.
Our staff is also active in several CF advocacy groups and projects sponsored by the Cystic Fibrosis Foundation, including the Great Strides Walk-a-Thon for CF research.
A Seamless Transition for Patients
Approximately 100 children are enrolled in the Pediatric CF Program directed by Division Chief Anastassios Koumbourlis, M.D., and coordinated by Beth Harkness, RN, CPN.
Pediatric CF patients generally prepare for transition to the adult program between 16 to 18 years of age. The CF Nurse Coordinators work closely with patients, families, providers and other team members to ensure a smooth transition.
Research to Improve Patient Outcomes
In addition to our center’s basic clinical and basic science research programs, as a designated CF care center, Children’s National participates in the CF Foundation's Patient Registry. The registry gathers data to help identify and evaluate health care issues affecting CF patients. Researchers use the information to advance treatments and improve quality of life for CF patients and families.
Because most of our patients choose to participate in the registry, we are able to track data on certain clinical variables such as weight, pulmonary function, nutritional status and infection to increase the overall understanding of CF and improve care.
To learn more about our current research activities and clinical trials, speak with a member of your child’s care team or center staff.
Cystic Fibrosis Center Team