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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 Center Director for 18 years and now is 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
9 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 mornings with additional clinic visit slots available
during Chest clinics on Tuesday afternoon and Thursday and Friday 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.
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