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.
Investigators are looking for people with two rare CFTR mutations to enroll in the RARE study, which seeks to inform the development of effective, targeted therapies for people who do not currently have a viable CFTR modulator on the horizon.
Published on May 6, 2019
There is a small but important number of people with two copies of rare mutations of the cystic fibrosis transmembrane conductance regulator (CFTR) gene who do not have a viable CFTR modulator on the horizon. Because few have these rare mutations, traditional late-stage clinical trials with large numbers of participants are impossible. Developing drugs for people with these rare CFTR mutations requires researchers to work with cells collected from these individuals in the lab. The RARE study is vital because it is collecting the cells from people with CF for this critical research.
During the study, researchers take samples of several cell types that can be used for lab tests through blood draws, nasal scrapings, and intestinal biopsies. Collecting intestinal cells is especially necessary because, unlike blood and nasal cells, intestinal cells can be grown almost indefinitely, providing a stable, long-term supply for development and testing of new targeted therapies.
Participation in the optional intestinal biopsy has lagged. Given the importance of these cells, we need your help to identify adult patients who are willing to participate in the intestinal biopsy, even if they have already participated in the nasal and blood sample collection.
The intestinal biopsy portion is open to adults ages 18 years and older with two nonsense mutations (also known as stop or x mutations).
Three sites (University of Alabama at Birmingham, The Minnesota Cystic Fibrosis Center, and University of Cincinnati Medical Center) are open to collect intestinal biopsy samples, and one additional site (Columbia University Cystic Fibrosis Program) is coming soon. Traveling expenses will be covered by the study.
We need your help! If you have patients who are eligible for this study, you can begin the referral process and contact a study site by visiting the RARE study page on the Clinical Trial Finder and clicking “Participate,” to contact the closest study location.
Remember that the Clinical Research Referral Support Program provides support to your site to offset the time spent referring patients.
For questions, contact Carmen.Ufret-Vincenty@seattlechildrens.org.
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