<%@LANGUAGE="JAVASCRIPT" CODEPAGE="1252"%> Seattle Children's Hospital Cystic Fibrosis Center

 

 

 

 

 

 

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University of Washington
Department of Pediatrics
Pulmonary and Sleep Medicine
Seattle Children's Hospital

Cystic Fibrosis Center

Seattle Children’s Hospital
Cystic Fibrosis Center

The University of Washington/Seattle Children’s Hospital Cystic Fibrosis Center is active in both patient care and research. Our mission is to improve the care of children with cystic fibrosis, to establish better treatments, and ultimately to find a cure for this disease. The Director of the Cystic Fibrosis Clinical Center and Co-Director, CF Therapeutic Development Center is Ron Gibson, MD, PhD.

Cystic Fibrosis is a genetically inherited disease that primarily affects the lungs and gastrointestinal system. There are approximately 30,000 individuals in the United States with cystic fibrosis, and the majority of patients are diagnosed in infancy. Cystic Fibrosis is considered to be a life-shortening disease, but advances in care have increased the median age of survival to more than 32 years old.

The Cystic Fibrosis Center at Seattle Children’s Hospital in Seattle, WA cares for approximately 220 children. We are accredited through the National Cystic Fibrosis Foundation as a parent center with three affiliate centers located in Spokane, Tacoma and Anchorage. We also work with the University of Washington Adult Cystic Fibrosis Center. Our combined efforts serve over 500 pediatric and adult patients with cystic fibrosis.

Medical care for CF patients is provided in both outpatient and inpatient settings. Patients are managed using a multidisciplinary approach. The CF team includes pulmonary physicians, nurses, nutritionists, social workers, and respiratory therapists. Many members of the Seattle Children’s CF team are nationally recognized for their work in both clinical care and research. Ron Gibson, MD, PhD has served as the CF Center Director since 1998. He succeeded Bonnie Ramsey, MD who served as the Center Director for 18 years and is now Director, Center for Clinical and Translational Research and Assoc. Director, Pediatric Clinical Research Center. Dr. Ramsey stepped down as CF Director in 1998 to begin work on the TDN, an organization that coordinates multicenter research amongst nine CF centers across the country.

The Seattle Children’s CF program has active inpatient and outpatient clinical programs. Cystic Fibrosis Clinics are held at Seattle Children’s Hospital on Tuesday and alternating Thursday mornings. The entire CF team participates in the clinical care and education of our patients with CF. The team strives to provide friendly and compassionate service that is tailored to the needs of each patient and family.

We promote education of our patients and families during both outpatient and inpatient encounters. We also hold a Parent Education Day each year. This is a daylong event that is organized by the CF Center Coordinator with the help of the entire staff. The staff give a variety of presentations geared to parents of children with CF. We also offer a monthly parent support group, which is facilitated by the CF nurses.


The Cystic Fibrosis Research Program

The University of Washington, Seattle Children's Hospital, and the Fred Hutchinson Cancer Research Center maintain active, integrated clinical and basic science research programs. Basic laboratory research is performed at the University of Washington School of Medicine under the aegis of the CF Research Development Program and at the Fred Hutchinson Research Center within the aegis of the Gene Therapy Center. The clinical research program is based at the General Clinical Research Centers (GCRCs) at the University of Washington Medical Center and at Seattle Children's Hospital. Patients from the Adult CF center and all three affiliate programs participate in clinical trials. The Therapeutics Development Network has its base in Seattle and orchestrates multicenter CF research projects with an emphasis on new treatments.