Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
The Dartmouth Institute and the Cystic Fibrosis Foundation, in partnership with Ann & Robert H. Lurie Children's Hospital of Chicago/Northwestern, University of Minnesota and Children's Hospitals and Clinics of Minnesota, will test an electronic version of a “coproduction of care” dashboard.
The dashboard captures patient-generated health information and questions for clinicians; a summary of current health including pulmonary function, nutritional health and overall well-being; and a summary of next steps following a clinic visit and barriers to sustaining daily care.
The CF Foundation engaged Get Real Health to build the electronic version of the dashboard for testing. By combining real-time, patient-reported data with clinical data to create the dashboard, care teams and individuals with CF can focus on treatment decisions and support self-management. The Foundation will also use the dashboard data to enhance information in the CF Foundation's Patient Registry. In early 2017, care teams, adults with CF and families at five additional programs will be invited to test the dashboard.
This work will be featured at the 2016 NACFC:
To learn more about the coproduction project, contact Kathy Sabadosa, M.P.H., at firstname.lastname@example.org.
Five CF programs will pilot the coproduction dashboard to demonstrate how the use of the dashboard by patients, families and clinical care teams during clinic visits can improve the quality, outcomes and value of care. The dashboard will include longitudinal and real-time clinical data; patient-generated health information, concerns and requests; a summary care plan; and the patient's reported health goals and barriers to sustaining daily care.
This pilot test is part of a larger conceptual model that shows how patient registries can support what the Institute of Medicine calls a “learning health system,” designed to improve care for individuals and patient populations, and serve as a platform for conducting outcomes and biomedical research. If successful, the pilot will expand to include additional programs, ultimately scaling to all 275 CF Foundation-accredited programs in the United States.
This project is jointly funded by The Dartmouth Institute with funds from the Robert Wood Johnson Foundation (RWJF) and by the CF Foundation. The RWJF aims to demonstrate a replicable model for improving outcomes and value that can be applied to any chronic disease population and rapidly deployed. The CF Foundation aims to design and implement a bi-directional information environment that improves the ability of clinicians and patients and families to coproduce CF care.
The five pilot sites are the pediatric and adult programs in Chicago (Ann & Robert H. Lurie Children's Hospital of Chicago/Northwestern) and two pediatric programs and an adult program in Minneapolis (University of Minnesota and Children's Hospitals and Clinics of Minnesota). These sites were selected on the basis of many criteria that make them excellent “test beds.” Each site has assembled a team of clinicians, patients and families and IT professionals to work on this project. Our team has met regularly with each site since August 2015 to co-design the coproduction dashboard and to explore the current clinical care delivery context, including the capture and use of patient-reported and clinical data using electronic medical record systems and the CF Foundation Patient Registry.
The pilot sites started testing a prototype of the coproduction dashboard in December 2015 and will continue until iterative, small-scale tests of an information technology solution begins.
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