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 Cystic Fibrosis Foundation has committed at least $100 million from 2019-2023 to the Infection Research Initiative as part of a sweeping effort to address the chronic and intractable infections that are a hallmark of cystic fibrosis.
The goal of the Infection Research Initiative is to identify and fill gaps in our existing
and expand it to meet our overall mission of improving detection, diagnosis, treatment, and outcomes of infections for people with cystic
Research Steering Committee
-- made up of CF community members and experts in CF clinical care, research, and drug development -- selected six research focus areas and determined key research priorities within each area. Each year, the steering committee will meet to evaluate
and adjust our portfolio to ensure we are meeting our overall mission. Many researchers are submitting their best ideas on how to tackle these problems through a
The six research focus areas outlined below constitute a robust, comprehensive program to improve our knowledge of CF infections, develop safe and effective treatments, and to improve current treatments for people with CF. (For an in-depth description
of the initiative, its research areas, and priorities, please refer to the
Research in this area will also focus on determining whether to monitor or treat a detected microorganism in the lungs or sinuses. For example, in some cases, early treatment for colonization may be unnecessary, while in others, it may be best to take preemptive action. The goal of this research will lead to more information to help patients and clinicians make informed decisions about the best course of treatment.
New technologies, such as whole genome sequencing and single-cell sequencing,
can be used to map out the entire genetic structure of a bacterium. This mapping can help researchers understand how certain bacteria cause disease and become drug-resistant and help them uncover ways to interrupt these disease-causing processes either
with novel antibiotics or non-traditional treatments. As more bacteria become drug resistant or difficult to treat, this area of research will become increasingly important to people with CF.
The CF Foundation meets with numerous companies every year to identify and accelerate potential therapies to treat CF infections and their related complications. In
addition, we are supporting research into new types of antimicrobials, such as bacteriophage or phage therapy, which uses viruses that attack bacteria to treat bacterial infections.
The lungs of someone infected by cystic fibrosis are unique and difficult to replicate in preclinical studies that try to determine if a new drug will work for people with CF. To overcome that problem, the Foundation supports research into new systems
that can replicate the environment of the CF lung. For example, the “lung on a chip” is a microchip that can mimic how the lung responds to different stimuli. If these models are successful, they will help move potential treatments through clinical
trials, so we can get safe and effective treatments to people with CF quickly.
To make the most effective use of current therapies, research is being conducted to understand how therapies may interact with other medications and whether people with CF need to adjust their doses or courses of treatment accordingly. We are also supporting
research to look at combinations of therapies for infection to determine which combinations are most effective against NTM, MRSA, and Pseudomonas.
People with CF are prescribed antibiotics frequently or may take antibiotics long-term as part of their standard daily care. The CF Foundation is seeking out research projects to understand the risks and benefits of antimicrobial use and their related
complications and is funding research to mitigate or treat known risks, such as hearing loss.
As we make tremendous strides in developing
and other drugs, it is vital that we begin to understand how these drugs will affect CF infections. Research in this area of focus will help shape clinical care as we prepare for further breakthroughs on our path to a cure. The CF Foundation
is supporting the development of two large research studies to understand how infections will evolve as people with CF start on highly effective modulator therapy -- treatment that provides more than a 10 percent increase in FEV1 and at
least a 50 percent reduction in pulmonary exacerbations.1
Scientists are studying
across all six areas of research focus identified by the Infection Research Initiative. As mentioned earlier, the goal of the Infection Research Initiative is to identify research priorities and areas in which we will need to bolster our efforts
based on an evaluation of the current infection portfolio and feedback from the Infection Research Steering Committee, people with CF, and their families.
The current infection research portfolio serves as a snapshot of where we are now and will allow us to refer back in future years to see where we may need to expand, especially in areas that have been identified by the community as priorities (e.g., fungal).
Using this as our baseline, we will be able to measure the success of the Infection Research Initiative in funding research that addresses the priorities identified by the CF Community and improves the outcomes of infection in people with CF.
About the Current Infection Research Portfolio
Graphs 1 and 2 depict our current infection research portfolio, which will be used as benchmarks to measure our success in diversifying our research and addressing priorities raised by the CF community. Projects that have been completed are not shown
in the graphs. The pie chart shows the percentage of projects within the entire portfolio broken down by microorganism. The bar chart breaks down the research focus areas currently being funded for each microorganism.
The “Multiple Organisms” category includes research projects involving more than one microorganism (e.g., studies that look at how microorganisms interact with each other, pulmonary exacerbations), and therapies that have the potential to treat more than
one type of infection.
The microorganisms identified in the graphs and listed below are being studied in the current infection research portfolio. Microorganisms not listed below
(e.g., Achromobacter xylosoxidans and
Stenotrophomonas maltophilia) have been identified as research gaps and will be addressed by the Initiative. Read more about what we are doing for each microorganism, and visit the
Drug Development Pipeline to learn more about new therapies in development or already in use by patients.
research projects compose almost 40 percent of the infection research portfolio. Although research on Pseudomonas spans all six research focus areas, a clear majority of the projects are directed at improving our understanding of how Pseudomonas interacts with other microorganisms and how the body responds to Pseudomonas infections. The Foundation
is also meeting with companies that could have potential treatments for Pseudomonas infections and new therapies that might treat more than one type of infection.
Back to list
Nontuberculous mycobacterium is an emerging pathogen that can be difficult to treat and has become more common recently in people with CF, infecting nearly 13 percent in 2018. The CF Foundation is supporting two large clinical studies to better understand
when to treat someone who cultures NTM and to standardize antibiotic treatment for people with NTM infections. In addition, we are supporting the development of new NTM treatments and funding research to improve our understanding of NTM and how people
Back to list
The Foundation created a category called “Multiple Organisms,” which encompasses research that includes more than one microorganism. For example, this category includes developing treatments that have the capacity to treat Pseudomonas and NTM
(or others), and research into finding
ways to treat pulmonary exacerbations that may not be linked to a specific microorganism. This category also includes studying the ways that microorganisms interact with each other inside the lung and how to preserve a balance that
prevents a dangerous microorganism from becoming more dominant. The Foundation is expanding support for research projects specifically looking at the microbial mechanisms, including viruses, that drive exacerbations.
The majority of the portfolio dedicated to Staphylococcus aureus (S. aureus) and
S. aureus (MRSA) focuses on improving our understanding of how the body may respond to infections from these bacteria. The portfolio also includes research to optimize current treatments and develop new treatments, such as the ongoing
Phase 3 clinical trial for a new inhaled treatment for MRSA.
The current infection research portfolio is focused on improving our understanding and developing new treatments for infections caused by Burkholderia cepacia. In addition, the Foundation is seeking to boost research efforts on other gram-negative bacteria, such as Achromobacter xylosoxidans and Stenotrophomonas maltophilia, as it is an identified area of need by the CF Community and the Infection Research Steering Committee.
Bacteriophage (Phage) Therapy
Experimental bacteriophage or phage therapy has generated a lot of attention in the U.S. recently as a way to treat drug-resistant infections. Although it is legal in some parts of Europe, phage therapy, which uses viruses to target difficult-to-treat bacteria, has not been approved by
the FDA for use in the United States. To date, phage therapy has been primarily used to treat acute infections. Because CF infections are often chronic and
microorganisms tend to colonize the CF lung, there are many unique challenges that must be overcome before phage therapy can be considered safe and effective for people with CF.
The Foundation is funding basic science studies to improve our understanding of the potential use and limitations of phage therapy. We are also working with groups of scientists to develop rigorous, controlled clinical studies that can help us
answer the question of whether phage therapy is a safe and effective way to treat CF infections.
Research centers on understanding how viral infections affect people with CF, including the role of viruses in CF exacerbations. Scientists also are investigating how viruses may interact with other microorganisms in the CF lung.
There is a tremendous need to understand when to treat and how to treat people with CF who culture fungi. The CF Foundation is funding more research to help us understand the risks and benefits of treatment when an individual has a positive fungal culture.
Researchers have been asked to submit proposals on how to standardize the detection of fungi and diagnosis of fungal infection, specifically Aspergillus.
By the end of 2018, there were more than 130 ongoing infection research projects, 55 of which were initiated that year. For a list of the academic-led infection research projects initiated in 2018, please refer to the
Infection Research Portfolio 2018. The list includes the lead investigator, institution, title of each project, as well as the breakdown of focus area and microorganisms addressed.
The steering committee evaluated the current funding portfolio and identified clear research gaps, helping to shape the 2019 research priorities described below.
In August 2019, the Foundation published two
Research Initiative Requests for Applications
(RFAs). In addition to these two RFAs, researchers in academia and industry can request funding for infection research through numerous other CF Foundation funding channels.
Once the applications are received by the Foundation, they are reviewed by a committee of experts in CF research for their scientific merit and relevance to the CF Foundation mission. Some of these funding programs also incorporate direct input from CF
community members (people with CF and their families who are members of Research Voice) into the review process.
The steering committee will reconvene in May 2020 to review the newly funded projects and the overall infection research
portfolio to evaluate the success of the first round of applications in addressing research gaps and priorities. New research priorities may be recommended based on the steering committee’s feedback.
If you are a person with CF or if you have a family member with CF and would like to be involved in setting research priorities or reviewing proposals submitted by CF researchers, please sign up to participate in
Community Voice. Numerous opportunities to provide your input on the Infection Research Initiative and other Foundation activities are offered throughout the year.
If you are a researcher looking for upcoming Infection Research Initiative RFAs or other funding opportunities, please refer the
Funding Opportunities page, which is regularly updated.
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1 Ramsey BW, Davies J, McElvaney NG, et al. A CFTR Potentiator in Patients with Cystic Fibrosis and the G551D Mutation. N Engl J Med 2011; 365:1663-1672. https://www.nejm.org/doi/full/10.1056/NEJMoa1105185 Published Nov. 3 2011. Accessed Sept. 9, 2019. DOI: 10.1056/NEJMoa1105185
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