Cystic Fibrosis Research and Clinical Trials
Research is currently being conducted to learn more about cystic fibrosis and how it affects our patients.
The Cystic Fibrosis Center is directed by the division of pediatric pulmonology at Hasbro Children's Hospital. The center is accredited by the Cystic Fibrosis Foundation and includes both pediatric and adult programs.
The pediatric cystic fibrosis clinic is held Thursday afternoons and some Monday afternoons on the lower level of Hasbro Children’s Hospital. Newly diagnosed patients are seen in either of these afternoon clinics. Their medical records must be received before an appointment can be scheduled. Patients are seen every three months, unless more frequent visits are needed.
What Is Cystic Fibrosis?
Cystic fibrosis (CF) is a chronic, progressive genetic disease that affects the body’s mucous glands. CF can affect the respiratory system, digestive system, sweat glands and reproductive system of children and young adults. Because there are many CF-related genetic mutations, symptoms can vary in each individual.
- Excessively salty skin
- Frequent greasy, bulky stools or difficulty with bowel movements
- Frequent lung infections, including pneumonia or bronchitis
- Male infertility
- Persistent cough and phlegm
- Poor growth or weight gain
- Wheezing or shortness of breath
Most patients who come to the Cystic Fibrosis Center at Hasbro Children's Hospital have already been screened and found to have a CF-related genetic mutation. Our services include evaluation to confirm the diagnosis of cystic fibrosis and treatment.
Cystic Fibrosis Treatment for Children and Teens
Our team of pediatric cystic fibrosis specialists treat children from birth until age 18. Most children will have four visits to the clinic per year.
During these visits, your child will be evaluated by a pulmonology physician, a respiratory therapist and a dietitian. In addition, you will periodically meet with a clinical social worker, a pharmacist and the nurse practitioner or clinic coordinator. During these visits, a detailed plan of medical, nutritional and respiratory care for your child will be developed and discussed with you.
Occasionally, a child with cystic fibrosis will need medical care that cannot be provided at home. Hasbro Children’s Hospital provides hospitalization in these cases, which usually lasts three to ten days.
By age 19, young adults with CF will transition to our adult cystic fibrosis team. To prepare pediatric patients and their families for this transition, patients begin meeting with the adult clinicians prior to turning 19.
Cystic Fibrosis Treatment and Services for Adult Patients
Our team of adult cystic fibrosis specialists treat young adults over the age of 18, as well as any adults seeking care at the center. Most adults will have four visits to the clinic per year. During these visits, you will meet with the same types of specialists that treat pediatric CF, and a new plan of medical, nutritional and respiratory care will be developed.
Occasionally, an adult with cystic fibrosis will need medical care that cannot be provided at home. Hospitalization is provided in the Jane Brown wing of Rhode Island Hospital in these cases, and usually lasts three to ten days.