Sue and John L. Weinberg Cystic Fibrosis Center
The Cystic Fibrosis Center at Columbia University Irving Medical Center (CUIMC) provides the highest quality care, with compassion, for children of all ages with cystic fibrosis (CF).
Located in NewYork-Presbyterian Morgan Stanley Children's Hospital, and with an outreach office in Stamford, Connecticut, our center is fully accredited by the Cystic Fibrosis Foundation, and participates in CF Foundation’s therapeutic development network and CF Learning Network. Physicians at CUIMC were the first to identify CF as a disease and use the sweat test for its diagnosis.
We provide expert care for children in our communities and across the globe.
Our goal is to improve quality of life for young people with CF and transition them to the adult CF program with optimum lung function and growth.
Our Approach to Cystic Fibrosis Care
Our dedication to giving patients timely and individualized treatment starts the moment they walk through our doors. Patients benefit from a “zero” wait time and are seen immediately by medical assistants and pulmonary lab staff, bypassing the waiting room completely.
Throughout their care journey, our patients and their families benefit from the unparalleled expertise, dedication, and experience of our care team. Your child’s care will start with a doctor who specializes in diseases of the lungs (pulmonologist). Your support team will include a nurse practitioner specializing in cystic fibrosis, a CF nurse coordinator, a social worker, nutritionist, respiratory therapist, a CF administrator, a QI (quality improvement) coordinator, a research nurse, and, in our Connecticut location, a naturopathic physician.
The entire team meets weekly to create individual treatment plans for our patients, as well as a weekly bedside round for our patients admitted to the hospital to discuss discharge planning needs. We work closely with our patients’ families to ensure the best possible care at home and at the center. Your child’s treatment plan may include:
- Diagnostic testing such as sweat tests, genetic testing, fecal elastase, blood tests, chest X-rays, and deep throat or sputum cultures
- Pulmonary function tests which measure how well your lungs are working
- Bronchoscopy, which looks at upper and lower airways
- Regular appointments with a pediatric pulmonologist
- Nutrition counseling
- Emotional support and counseling services
- Training in airway clearance techniques and exercise regimens
- Transition program for smooth hand over of care from our center to the adult center
We have a special focus on the importance of sleep in managing CF, with two board-certified sleep medicine doctors on our team, one of whom is the director of the CF center.
Family Advisory Board
The CF Family Advisory Board is an integral part of our center and empowers patients and their families to be full members of our care team. The board members are essential to our quality improvement (QI) projects, newsletter, and biannual family educational sessions at our New York and Connecticut sites. As a participating center in the CF Learning Network, we conduct QI projects in telemedicine, FEV1 Indicated Exacerbation Signal, food insecurity, and health-related quality of life measurement. Our center has been hosting a virtual family support discussion group to give families the space to talk about dealing with COVID-19 pandemic and find a safe and open forum to discuss their concerns.
We also work closely with Columbia’s pediatric subspecialists in other areas, including gastroenterologists (completed the CF Foundation’s DIGEST grant), endocrinologists (through an EnVision grant administered by the CF Foundation), geneticists, infectious disease specialists, psychiatrists, otolaryngologists, and interventional radiologists.
Looking ahead in CF care, we are providing integrative support for patients to improve symptoms and quality of life. We have a naturopathic physician and an acupuncturist in our Stamford office who can provide treatment support with alternative therapies.
Transition to Adult Care
Thanks to medical advances over the past 30 years, pediatric patients with CF are living longer and healthier lives. In response, we have developed a robust transition program. We work with our young patients, beginning at around age 14, to ensure a smooth transition and transfer of care from childhood to adult life. Transition program appointments, mainly as telehealth visits, are set up separate from the regular clinic visits to specifically address transition-related concerns. Conducted by our nurse practitioner, these visits serve as a forum for patient and family education and independence. Our team collaborates with the Columbia’s adult CF program to ensure a smooth transition and transfer of care from childhood to adult life.
Improving CF Care Through Research
As a participating center in Cystic Fibrosis Foundation’s Therapeutics Development Network, Columbia University’s investigators and research staff work to promote quality, safety, and efficiency in CF clinical research. Our team includes a dedicated CF research nurse coordinator and our patients have access to new treatments through clinical trials. Our aim is to speed the delivery of new and improved therapies to people with cystic fibrosis. For further information about ongoing research trials, contact Dr. Hossein Sadeghi, the CF Center director.
Columbia’s Cystic Fibrosis Center is dedicated to improving the lives of children with CF around the world. Families traveling from overseas can access our care either through NewYork-Presbyterian’s International Office or through the Bridge of Hope program. The Bridge of Hope program in Stamford, Connecticut, provides care to individuals from resource-limited regions of the world. We provide an initial assessment, evaluation, and management plans and communicate with local providers in patients' hometowns. We aim to lessen the rate of progression of cystic fibrosis on a limited number of individuals with CF until adequate resources are established locally.
Affiliate Center Meetings
Twice a year our pediatric cystic fibrosis team, as well as members from infectious disease, gastroenterology, endocrinology, genetics, ENT, lung transplant team and the adult cystic fibrosis team, meet with colleagues from our affiliate centers at St. Joseph’s Hospital (NJ), and Stamford Hospital (CT) to discuss interesting cases and improve quality of care for our patients.
The Stephanie Lynn Kossoff Memorial lectureship was established in 1979 in memory of Stephanie Lynn Kossoff, the 19-year-old daughter of Mr. and Mrs. Burton Kossoff who died of cystic fibrosis. The purpose of the lectureship is stimulation of studies on the pathogenesis and treatment of cystic fibrosis.