Cystic Fibrosis Center

cystic fibrosis patient

The Cystic Fibrosis Center at Boston Children's Hospital is one of the oldest and largest cystic fibrosis centers in the United States. Caring for more than 600 children and adults each year, the CF Center provides comprehensive services, ranging from evaluation and diagnosis to treatment, patient education, and access to clinical research studies.

The CF Center is proud to report that our patients continue to fare in the top 10 to 20 percent of patients nationwide for a variety of health parameters, including lung function and nutritional status. Our Center is a leading participant in the CF foundation therapeutics Development Network, participating in over 50 clinical trials evaluating novel approaches to therapy in CF.

Expertise that goes deep and reaches far

Boston Children’s CF Center is staffed by an experienced team of clinicians, all of whom have specialized training in the care of patients with cystic fibrosis. Our multidisciplinary staff includes:

Our staff is involved in CF programs within the community, educates physician trainees at Harvard Medical School and is actively engaged in research into new treatments for cystic fibrosis—including potential therapies that target the lungs and digestive system and new treatments to correct the problems that cause CF.

Quality Care

The CF Center has received multiple awards recognizing high quality care. To be considered, an organization must show sustained quality improvement work that improved outcomes; actively use clinical outcomes data to identify opportunities for improvement; document results of improvement efforts; involve patients and families in identifying, designing and implementing improvement efforts; employ innovative strategies to improve care processes and outcomes; and implement system changes that result in high reliability of care processes. Our Center participates in numerous quality improvement collaboratives and is recognized as a leader in care throughout the country.

About Us 

The Cystic Fibrosis Center at Boston Children's Hospital is one of the oldest and largest cystic fibrosis centers in the United States and was founded by Dr. Harry Schwachman, one of the earliest physician investigators to help characterize the disorder.

Leadership

Under the direction of Dr. Mary Ellen Wohl from 1986-2005, and now supervised by our current director, Henry Dorkin, MD the CF Center is proud to report that our patients continue to fare in the top 10 to 20 percent of the country for a variety of health parameters including lung function and nutritional status.

Teaching and Research

Our staff is involved in CF programs within the community, the education of physician trainees at Harvard Medical School, publishing in professional journals, and leading research that is advancing the way cystic fibrosis is treated.

Adult Transition 

As people with cystic fibrosis age, they often develop more adult-specific health issues. So it's important that they be seen by a physician trained in adult care.

At Boston Childrens' Cystic Fibrosis Center, our Adult Transition program allows adolescents with CF to successfully transition to adult care providers.

Currently, more than 85 percent of our adult patients are seen by adult providers. We have established the following guidelines to help us achieve our goal of 90 percent by April 2007:

Outpatient Care

Age 13-15 years:

Patients are seen by pediatric care providers without their parents in the room. After the evaluation parents may return to the room to meet with the doctors and nurses.

Age 16-17 years:

Adult care providers (physician and/or nurse coordinator) introduce themselves to the patient and family.

Age 18 and older:

Patients are seen in the Cystic Fibrosis clinic by adult care providers. If possible, this occurs at the first visit after the patient's 18th birthday.

Inpatient Care

Age less than 18 years:

Patients are hospitalized at Boston Children's Hospital.

Age 18 and older:

Patients may be hospitalized at Brigham & Women's Hospital or Faulkner Hospital (BWH/FH). Each patient is evaluated by their CF team to determine the suitability of the referral. Once they have been admitted to BWH/FH, subsequent admissions usually take place at BWH/FH.

BWH Inpatient Admission Information