Adult Cystic Fibrosis Center
The Massachusetts General Hospital Adult Cystic Fibrosis Program is staffed by world-class specialists who provide outstanding, comprehensive care to adults diagnosed with this uncommon and complex disease.
- Phone: 617-724-0520
Exceptional, Continuous Care for Adult Cystic Fibrosis Patients
For decades, cystic fibrosis was believed to be a childhood disease. Recent medical advancements, however, have deepened the understanding of cystic fibrosis and paved the way for more effective therapies.
Today, many more children with the disease are living into adulthood and enjoying a better quality of life. Also, many patients are now being diagnosed in adulthood with nontraditional forms of cystic fibrosis. About 45 percent of the 30,000 cystic fibrosis patients in the United States are age 18 or older.
The Mass General Adult Cystic Fibrosis Program is unique in Boston. In addition to managing care for adults, we work closely with pediatric specialists in cystic fibrosis from the MassGeneral Hospital for Children, providing continuity of care at the same hospital for pediatric patients when they become adults.
This team approach ensures our physicians and nurses are deeply familiar with each patient's childhood development, family history, daily activities and course of treatment. As a result, our clinicians can provide exceptionally personalized care and support to every patient. Additionally, our team's breadth of knowledge is pivotal in developing optimal treatment plans for newly-diagnosed adult patients.
What to Expect
Before your first appointment, please ask your referring physician to send us your medical records and test results, including X-rays and other images. During the evaluation, our specialists will review your medical and family histories and perform a quick and painless sweat test to determine whether you have cystic fibrosis.
If you are diagnosed with cystic fibrosis, we tailor a treatment program to manage your condition, which may include problems with lung function and digestion. Ongoing care typically centers on clearing the lungs and central airways of fluids and adjusting diet to maintain healthy nutrition.
Preventive Therapies & Innovative Treatments
While we perform airway-clearance techniques at our office, our nurses and physical therapists can show patients how to repeat the techniques safely and effectively at home. A common method is a simple percussive technique (clapping the chest and/or back) that breaks up lung mucus. We also may prescribe medications via an inhaler to help clear the lungs and airways.
When necessary, we may prescribe antibiotics to help patients fight bacterial infections in the lungs. In some cases, we conduct genetic tests to determine whether a patient is a good candidate for a highly-targeted drug therapy or treatment available through a clinical trial. Learn more about open clinical trials
Leadership in Cystic Fibrosis Care & Research
Our clinical goal is to administer effective and compassionate care that helps patients diagnosed with cystic fibrosis enjoy fulfilling and healthier lives. We also conduct leading-edge research to develop new therapies, a mission we pursue in partnership with nearly 80 other medical centers across the United States.
An Expert & Compassionate Clinical Staff
We are experienced clinical professionals who have dedicated our careers to diagnosing and treating adults with cystic fibrosis. Our team includes a fellowship-trained specialist in adult cystic fibrosis as well as nurses and nurse practitioners who help patients manage every aspect of their care.
We also place a high priority on education to prevent problems such as recurring infections and allow patients to proactively manage their conditions. A licensed social worker helps patients adapt to the everyday challenges the disease presents, and our staff nutritionist works with patients who have digestive problems to maintain a healthy diet and metabolism.
The clinical director of our program is Leonard Sicilian, MD, who has treated patients with cystic fibrosis for over 30 years. Dr. Sicilian has practiced the complete range of pulmonary and critical care medicine with a focus on cystic fibrosis, critical illnesses and asthma. He is committed to teaching and mentoring the next generation of leading physicians and researchers in the field.
Comprehensive, Multidisciplinary Care
In addition to the lungs and digestive system, other systems in the patient's body may be affected by cystic fibrosis. To provide optimal care to patients with multiple conditions, we work closely with other specialties throughout Mass General, including:
- Gastroenterology: for patients with digestive problems, pancreatitis and liver disease
- Endocrinology: for patients with diabetes
- Obstetrics: for patients with high-risk pregnancies
- Infertility: for male patients
For patients who need surgery for chronic sinusitis or other upper respiratory problems, we collaborate with experienced surgeons at Massachusetts Eye and Ear Infirmary, located next to our hospital's Boston campus. When a patient requires lung transplantation, we work alongside leading specialists from the Mass General Lung Transplant Program.
Groundbreaking Cystic Fibrosis Research
Our program is accredited by the Cystic Fibrosis Foundation (CFF), which partially funds our clinical research efforts. We actively participate in the organization's major initiatives, including:
- The CFF Registry: With the patient's consent, we enter information about his or her condition, history and treatment into a database that covers more than 26,000 patients nationwide. All data entered is anonymous. The registry will provide researchers with a greater quantity and higher quality of data to aid in discovering new therapies and, ultimately, a cure
- The Therapeutics Development Network: Comprised of nearly 80 U.S. research centers, this network oversees and evaluates the safety and quality of clinical trials, which may offer promising treatments for some of our patients
Learn about participating in clinical trials in the Partners HealthCare System.
In addition to working with the CFF, our researchers are pursuing groundbreaking projects such as:
- Regenerative medicine: therapies based on stem-cell research to regenerate organs and tissues damaged by cystic fibrosis
- Endocrinological studies: hormonal treatments for the nearly 30 percent of cystic fibrosis patients who develop diabetes
- Advanced PET scans: images that help physicians and scientists understand and treat inflammation of airways more effectively
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.
Recipient of Massachusetts General Hospital's first hand transplant operation performed by Curtis L. Cetrulo Jr., MD, on path to recovery.