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 latest trends in the health of people with cystic fibrosis who participate in the Patient Registry have been published in the 2017 Patient Registry Highlights Report.
June 1, 2018
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For more than 50 years, the Cystic Fibrosis Foundation has used the Patient Registry to collect and track the health information of people with CF. We have used this data to inform specialized care for people living with CF who receive their care at CF Foundation-accredited care centers. Every year, the Foundation shares this Registry data as a summary in a Highlights Report, followed later in the year by a more detailed Patient Registry Annual Data Report.
In 2017, we continue to see steady gains in survival. For people born between 2013 and 2017, half are predicted to live to be 44 years of age or older. Adults with CF have told us that, perhaps more important, is the increase in percentage of people who are reaching key milestones in life, with more than half of the population employed in full- or part-time jobs, 31 percent having earned a college degree, and 43 percent being married or living with a partner.
We're also seeing consistent improvements over the past 10 years in both lung function and nutrition as indicated by average FEV1 percent predicted and body mass index (BMI). And in the short span of one year, more people with CF who are 12 and older are being screened for depression or anxiety than in past years, an important step toward treating the whole person.
When viewed over time, meaningful trends can emerge from the health information of people with CF. These trends can help improve not only their individual care, but also inform treatments and care practices for the larger CF population.
Data collected by the Registry is provided to clinical care teams who can share individual data with their patients and families as Patient Summary Reports.
People can also view combined data that have had personally identifiable information removed in single or five-year time spans by looking up individual care centers to compare against care centers nationwide. These data are provided so that patients and families can partner with their care teams to improve care at their center.
Researchers can request use of de-identified data by completing an application and signing a confidentiality agreement. Similar to the safeguards taken by registries in Canada and the United Kingdom, the Foundation's Patient Registry data is maintained to protect the integrity of the data and provided in a way that honors our responsibility to protect the privacy of all who participate. People with CF and their relatives can also help move research forward and can learn how to do so here.
When we work with Registry data, we work with a lot of numbers. However, we never forget that behind every number, there is a real person. Adults with CF and parents of children with CF agreed to share their data with the Registry to help clinicians and researchers understand the disease better. Now, thanks to their decision, we have an important and irreplaceable source of information about CF, and possibly the best rare disease registry in the world. Given the continuous contributions of our collective community, the Patient Registry helps tell the story of CF overall, and is a testament of what we can achieve together.
Senior Director of Patient Registry Program, Cystic Fibrosis Foundation
Dr. Alexander Elbert is the senior director of the Patient Registry program at the Cystic Fibrosis Foundation. He received his degree in Chemical Engineering from Igor Sikorsky Kyiv Polytechnic Institute and Ph.D. in material science from the Institute for Superhard Materials. Dr. Elbert designs and maintains the CF Patient Registry data forms and ensures the quality of the registry data. He is also a part of the team that produces the CF Registry annual reports and manages the online registry reporting tool for clinicians, CFSmartReports. A fan of the Washington Capitals, he hopes to see Alexander Ovechkin raise the Stanley Cup soon!
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
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