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CF clinic main number:
Contact the CF nurse line at 617-643-2223
Cystic fibrosis (CF) is a complex, inherited disease that affects many of the body’s mucus glands, leading to problems in the lungs and gastrointestinal tract including failure to absorb nutrients. The disease affects about 30,000 people in the United States. Although there is no cure, comprehensive care has led to improved prognoses for many people and research is providing new insights and new therapies.
The Joey O'Donnell Cystic Fibrosis Center at MassGeneral Hospital for Children is committed to providing first-class, individualized care for each patient. We have an established multidisciplinary team to provide preventive care, active management of lung health, nutrition support and psychological support. Successful treatment is accomplished through frequent outpatient visits with the CF team, direct communication with families and educational programs.
The Cystic Fibrosis Center is staffed with a dedicated multidisciplinary team of cystic fibrosis specialists including:
For families coping with a positive result from a CF newborn screening test, we offer a state-of-the-art system for CF diagnostic testing (sweat chloride testing), and our CF specialists will meet with you the same day to discuss the test results.
The CF team is available to our patients at each visit. The other medical needs of our patients are assessed by a comprehensive group of pediatric specialists at MassGeneral Hospital for Children, including pediatric surgeons, endocrinologists and hepatologists. Ear, nose and throat specialists are available from the adjoining Massachusetts Eye and Ear Infirmary. In addition, MassGeneral Hospital for Children has active organ transplant programs.
As children with cystic fibrosis get older, they have different needs. We encourage self-care and responsibility for health care and we partner with families to facilitate teenagers’ transition to self-care, which includes gradual transition to the adult Cystic Fibrosis Program. Massachusetts General Hospital is in the unique position to follow patients into adulthood and offer smooth continuity of care as they transition from a pediatric to an adult provider.
We are in the process of reestablishing our Parent Support Group and establishing a Young Adult Support Group using electronic media. These groups will use both guest speakers with focused discussion and free-form, participant driven discussions. For more information, please contact our nurse coordinator or social worker.
An important issue related to patient care involves preventing the spread of harmful bacteria. We have prevention protocols in place to protect our patients with cystic fibrosis.
The Cystic Fibrosis Foundation has designated MassGeneral Hospital for Children a Cystic Fibrosis Therapeutic Development Center. Critical cutting-edge clinical research forms the basis of therapeutic advances, and our program is involved in most major clinical trials. Currently, we offer over 15 clinical therapeutic trials for CF patients, with therapeutic treatments targeting CFTR modulation (“correctors”), inflammation, and airway mucociliary clearance. In addition, MGH has a strong history of leading the field in basic, translational and clinical research. CF-specific research programs at MGH include groups focused on lung regeneration (Jay Rajagopal Laboratory), CF related bacterial pathogens (Laurence Rahme Laboratory, Fred Ausubel Laboratory), CF related airway inflammation (Bryan Hurley Laboratory), airway micro-imaging (Guillermo Tearney Laboratory), CF sinus microbiome (Katherine Lemon Laboratory), and bone health (Melissa Putman) and mental health related to CF (Anna Georgiopoulos).
The Pulmonary Function Testing Laboratory at MassGeneral Hospital for Children has comprehensive state-of-the-art facilities for performing and interpreting pulmonary function testing in children. The lab is registered with the American Thoracic Society and serves the Cystic Fibrosis Foundation Accredited Care Center.
At MassGeneral Hospital for Children, we know that the time of your child’s diagnosis and treatment is a very stressful one and we strive to provide an open, welcoming environment. We believe that no one knows a child as well as the parent does: parents, along with primary care providers, become our partners in a child's care and have an active voice in all treatment plans.
Accepting New Patients
Cystic fibrosis (CF) is an inherited chronic disease that affects the lungs and digestive system. CF causes the body to produce thick, sticky mucus that leads to progressive lung infection and difficulty gaining weight.
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Praised by experts as a breakthrough for patients with a particular form of cystic fibrosis, ivacaftor was approved by the United States Food and Drug Administration (FDA) in January 2012 and is the first of its kind to treat the underlying defects of the disease, rather than manage its symptoms.
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Researchers in the Center for Regenerative Medicine at Massachusetts General Hospital and the Harvard Stem Cell Institute have taken a critical step toward a treatment for Cystic fibrosis and other fatal lung diseases.
MGHfC Pediatric Cystic Fibrosis Center
MGH Professional Office Building
Appointment Line: 617-726-8707MGH New Patient Registration: 866-211-6588MGHfC New Patient Appointments (Access Center): 888-644-3248Nurse Line: 617-643-2223Fax: 617-724-2803
Pulmonary Function and Sweat Chloride Testing Laboratory
For testing appointments please call: 617-724-0703 or 617-724-2992Orders can be faxed: 617-724-2803 (ATTN: Pulmonary Function Laboratory)
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