The Pediatric Cystic Fibrosis Program is accredited by the Cystic Fibrosis Foundation for its comprehensive, high-quality care and is recognized as a leader throughout the country. As one of the oldest cystic fibrosis centers, our clinical team has broad and extensive experience in CF and its health complications, and provides coordinated care.
A focus on outcomes, with family partnership
We take a team-centered approach that includes weekly team meetings and frequent opportunities for adolescents and families of younger children to participate in care decisions. To ensure the best outcomes, we share data with the CF Foundation Patient Registry, comparing notes on lung function, infections, mental health, nutrition, disease flares, and medications. Our dedicated quality improvement team, a founding member of the national CF Learning Network, meets regularly and participates in numerous quality improvement collaboratives. Families and older children are key participants in these efforts.
Research
Boston Children’s is a lead center in the Cystic Fibrosis Foundation Therapeutics Development Network, enabling us to enroll children and adolescents in a variety of clinical drug trials and other studies aimed at improving long-term health. We care for the whole child, and we conduct ongoing quality assurance programs aimed at minimizing symptoms and maximizing quality of life.
Learn about our research.
Transition to adult care
Our care team works closely with clinicians in the Adult CF Program, run jointly with Brigham and Women’s Hospital next door, to ensure that your child’s health issues are addressed as they get older and enabling adolescents with CF to gradually transition to adult care. We work closely with families to identify the right time to transition to adult providers and adult hospital care.
Several pediatric team members also work with our adult program, easing the transition process. To help your child prepare, clinic visits will cover how to schedule appointments, how to communicate with the Cystic Fibrosis Center, what routine care will be needed, what to do in the event of illness, and how to request prescription refills. We also cover sexual and reproductive health, and tips for healthy eating and exercise.
Community
When children and their families come here for their cystic fibrosis care, they also become part of a community of families that are invited to social events, virtual chats, speaker presentations, and more. We can also connect you with support groups and CF community organizations.
