Pediatric Cystic Fibrosis Center
The Joey O'Donnell Cystic Fibrosis Center at MassGeneral Hospital for Children is committed to providing first-class, individualized care for each patient with cystic fibrosis.
- 617-726-8707 (CF clinic main number)
- 617-643-2223 (CF nurse line)
Meet the Team
- Samuel M. Moskowitz, MD
- Mary S. Fracchia, MD
- Allen Lapey, MD
- Anna Maria Georgiopoulos, MD
- Thomas B. Kinane, MD
- Benjamin A. Nelson, MD
- Jayaraj Rajagopal, MD, PhD
- Lael Yonker, MD
- Anita St. John, RN, AE-C
- Joan W Murphy, RN, MBA, AE-C
- Gretchen M. Garlow, RD, CNSC, LDN
- Matthew Nippins, PT, DPT, CCS
- Pat Costello, RRT, CPFT
- Edward C. Burns, RRT, CPHQ
- Amy Krasner, MSW, LCSW
- Caitlin Doolittle
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.
Comprehensive Services and a Multidisciplinary Team
The Cystic Fibrosis Center is staffed with a dedicated multidisciplinary team of cystic fibrosis specialists including:
- Physicians certified in pediatric pulmonology
- Respiratory therapists
- Social workers
- Pulmonary function specialists
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.
Young Adult Support Group
We offer the Young Adult Support Group in conjunction with our Transition Program. Members are 16 – 22 year olds who collaborate with members of the CF team to decide on the content of monthly meetings. The CF nurse coordinator and CF social workers organize and coach the support group; they can be contacted for more information.
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.
Cutting-Edge Clinical and Basic Research
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. In addition, several basic research groups at MGH focus on lung regeneration (Jay Rajagopal Laboratory) and bacterial pathogens (Sam Moskowitz Laboratory, Laurence Rahme Laboratory, Fred Ausubel Laboratory) related to cystic fibrosis.
Pediatric Pulmonary Function Testing Laboratory
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.
A Tradition of Caring
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.
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.
The following related clinical trials and research studies are currently seeking participants at Massachusetts General Hospital. Search for clinical trials and studies in another area of interest.
Cystic Fibrosis: VX09-809-102: A Phase 2, Multicenter, Double-Blind, Placebo-Controlled, Multiple-Dose Study to Evaluate the Safety, Tolerability, Efficacy, Pharmacokinetics, and Pharmacodynamics of Lumacaftor Monotherapy, and Lumacaftor and Ivacaftor Combination Therapy in Subjects with Cystic Fibrosis, Homozygous or Heterozygous for the F508del-CFTR Mutation [Cohort 4]
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.
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.
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.
MGHfC Pediatric Cystic Fibrosis CenterMGH Professional Office Building
275 Cambridge Street, Suite 530
Boston, MA 02114
Hours: 8 am – 5 pm, Monday – Friday
Public Transportation Access: yes
Disabled Access: yes
Appointment Line: 617-726-8707
MGH New Patient Registration: 866-211-6588
MGHfC New Patient Appointments (Access Center): 888-644-3248
Nurse Line: 617-643-2223
Pulmonary Function and Sweat Chloride Testing Laboratory
For testing appointments please call: 617-724-0703 or 617-724-2992
Orders can be faxed: 617-724-2803 (ATTN: Pulmonary Function Laboratory)
- 617-726-8707 (CF clinic main number)
- 617-643-2223 (CF nurse line)
Contact MassGeneral Hospital for Children to schedule an appointment with one of our specialists.
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