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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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 Cystic Fibrosis Foundation Patient Registry contains data since 1986 to track the health of people with CF in the United States.
The Cystic Fibrosis Foundation Patient Registry is an invaluable tool for researchers who are interested in conducting observational studies about people with CF in the United States. About 50,000 individuals have been followed in the Registry, and many have been included for over 20 years.
Researchers who wish to request Registry data for observational studies can complete the formal application, which includes:
To date, more than 100 projects using CF Foundation Patient Registry data have been approved. Through many manuscripts published in peer-reviewed journals, these projects have made significant contributions to our knowledge of the disease.
Project topics include:
A list of ongoing and completed approved Patient Registry data requests is available for download. We encourage you to review these projects to foster collaboration and prevent duplication of efforts.
The formal application guidance document indicates the format of the applications, regulatory requirements, and other responsibilities for individuals receiving Registry data. Please note that we require the involvement of a CF Foundation-accredited care center director as a member of the project team.
We recently linked the CF Foundation Patient Registry with The Pediatric Health Information System (PHIS) database. Investigators at PHIS sites can request to use these linked data using the same application process described above.
Requests for Patient Registry data undergo a thorough review for scientific merit to ensure that the information needed for the study is available within the Registry and that the proposed study design and analyses will yield valid results. This review is completed by members of the Patient Registry/Comparative Effectiveness Research Committee, comprised of CF clinicians and researchers working with CF Foundation staff.
Meeting these requirements allows the CF Foundation to maintain our obligation and commitment to protecting the privacy of people with CF who allow their information to be included in the Registry. This information is protected by the Health Insurance Portability and Accountability Act (HIPAA) and the informed consent that was signed by every Registry participant or their legal guardian through their CF Foundation-accredited care center. The CF Foundation is entrusted with this personal health information and is responsible for keeping that information private and secure. For this reason, we have a standard set of criteria that must be met by all individuals requesting to use Registry data.
The request and review process can take at least three months once the application and variable list are submitted. If the application is approved, data are securely delivered to the researcher after all regulatory and legal requirements are met.
Projects generally take up to three years to complete. Study investigators are required to submit annual progress reports and are encouraged to present their findings to the larger CF community at the annual North American Cystic Fibrosis Conference and through dissemination in peer-reviewed journals.
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