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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 causes a defect in the electrolyte transport system, leading to problems in the function of many organ systems such as the lungs and gastrointestinal tract. CF affects about 30,000 people in the United States. Although there is no cure yet, comprehensive care has led to improved prognoses for many individuals living with CF and research is providing new insights and new therapies.
The Pediatric Cystic Fibrosis Program at MassGeneral Hospital for Children (MGHfC) is a Cystic Fibrosis Foundation (CFF) accredited pediatric CF clinic 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. Optimal treatment is accomplished through frequent outpatient visits with the CF care team, direct communication with families, and educational programs.
The Massachusetts General Hospital (MGH) Cystic Fibrosis Center is comprised of the Pediatric CF Program and the Adult CF Program. Members of these care teams work closely to provide optimal care across all ages, with a fluid transition from the pediatric program to the adult program. For more information on the adult CF program, please visit theAdult Cystic Fibrosis Center page.
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.For sweat test appointments please call: 617-724-0703 or 617-724-2992. Orders can be faxed to 617-724-2803 (ATTN: Sweat Test Laboratory)
The Cystic Fibrosis Center is staffed with a dedicated multidisciplinary team of cystic fibrosis specialists including:
Accepting New Patients
Accepting New Patients
Accepting New Patients
The Pulmonary Function Testing Laboratory at MGHfC 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.
For testing appointments please call: 617-724-0703 or 617-724-2992Orders can be faxed to 617-724-2803 (ATTN: Pulmonary Function Laboratory)
The other medical needs of our patients are assessed by a comprehensive group of pediatric specialists at MGHfC, including:
Pediatric Ear, Nose and Throat (ENT) Specialists are available from the adjoining Massachusetts Eye and Ear Infirmary.
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.
At MGHfC, 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 their parent does. Parents and caregivers, along with primary care providers, become our partners in a child's care and have an active voice in all treatment plans.
An important issue related to patient care involves preventing the spread of harmful bacteria. We follow the CFF Infection Prevention and Control Care Guidelines in order to protect our CF patients in the clinic and hospital setting.
Individuals with CF may need to stay in the hospital (inpatient) for the management of a chest infection or other complications of their disease. Children and adolescents are admitted to the pediatric inpatient units at the MGHfC, which are located on the 17thand 18thfloors of the Ellison Building at MGH. More information regarding inpatient visits at MGHfCcan be found here. Specifically, we encourage our CF patients to bring all of their home medications with them for admission, as well as sneakers and athletic gear or comfortable clothing for our young patients and adolescents to fully participate in chest physical therapy.
For patients with advanced lung disease, one life-lengthening treatment option to consider is lung transplant. We work closely with patients, families, and the lung transplant team at MGH to promote patient education regarding this surgical procedure and to ensure a smooth transition to lung transplant evaluation when indicated.
As children with cystic fibrosis get older, they have different needs. We partner with families to facilitate teenagers’ transition to self-care, which includes a gradual transition to the Adult Cystic Fibrosis Program. The MGH Cystic Fibrosis Center is in the unique position to follow patients from infancy into adulthood and offer smooth continuity of care for patients as they transition from a pediatric to an adult CF provider.
MGHfC is a Cystic Fibrosis Foundation supported therapeutic development center and part of the nationwide therapeutic development network. 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. If you are interested in participating in any of these clinical trials, please contact our research team at 617-726-3716 or firstname.lastname@example.org or email our senior clinical research coordinator, Hanna Pinsky email@example.com.
To find a clinical trial that is right for you, go to the CFF Clinical Trial Finder.
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:
This past May marked the 11th anniversary of MGHfC Research Day, an annual event that recognizes the pioneering research of investigators throughout the hospital whose discoveries help to better understand childhood health and disease. The focus of this years’ event was on innovation and taking children’s health and medicine even farther into the future with cutting edge care and research.
Laura Williams, RN, of the Ellison 18 pediatric inpatient unit, will take on the Boston Marathon April 17 to benefit the Joey O'Donnell Cystic Fibrosis Center at MassGeneral Hospital for Children.
The 2014 Boston Marathon marked a triumphant return for the Mass General Marathon teams.
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.
Crossing the finish line of a marathon is a feat in itself, but completing the race and supporting a good cause is a triumph times two.
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
275 Cambridge Street, Suite 530Boston, MA 02114
8 am – 5 pm, Monday – FridayAppointment 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)
Follow us on Facebook @Mass General Hospital for Children Cystic Fibrosis Center.
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