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.
Through standardization and careful attention to quality, the Therapeutics Development Network's National Resource Centers help ensure cystic fibrosis clinical trials are safe and effective and yield high-quality data.
Specialized procedures are often needed to measure the outcomes of cystic fibrosis clinical trials. These include both laboratory-based measurements, such as cytology and inflammatory markers, and interpretive outcomes, such as computed tomography and nasal potential difference.
Personnel at each National Resource Center consult with study sponsors and investigators about the use of specialized CF outcome measures and provide related support for specific studies.
Services offered may include, but are not limited to:
Contacting the National Resource Centers early in the study development process can help make study setup more efficient and ensure more timely and cost-effective completion of studies.
For more information about specific services, contact the center personnel listed below. Input on study development or implementation can also be arranged through the Consulting Services Program.
The Therapeutics Development Network (TDN) Center for Biochemical Markers provides expertise in the measurement of biomarkers of inflammation and injury and measures of nutritional status, including vitamin and antioxidant levels, in blood, sputum, bronchoalveolar lavage fluid, and urine specimens.
Scott D. Sagel, M.D., Ph.D, Laboratory Director
Rebecca Peters, M.B. (ASCP), Laboratory General Manager
The TDN Center for CF Microbiology provides state-of-the-art support and expertise in the isolation, quantitation, identification and susceptibility testing of CF-specific pathogens for clinical trials.
Lucas Hoffman, M.D., Ph.D., Laboratory Director
The TDN Center for CFTR Detection specializes in the performance and interpretation of nasal potential difference (NPD) traces and other measures of cystic fibrosis transmembrane conductance regulator (CFTR) detection in CF clinical trials, such as intestinal current measurements, lower airway potential difference measurements, and sweat evaporimetry.
George M. Solomon, M.D., Director
Steven M. Rowe, M.D., MSPH, Associate Director
The TDN Center for Diagnostic Imaging facilitates and provides guidelines for the use of imaging procedures in CF clinical trials. These include, but are not limited to, computed tomography (CT), positron emission tomography (PET), magnetic resonance imaging (MRI), ultrasonography (US), chest radiography (CXR), as well as emerging technologies such as artificial intelligence (AI) and machine learning.
R. Paul Guillerman, M.D., Co-Director
Scott K. Nagle, M.D., Ph.D., Co-Director
The TDN Center for Interpretive Cytology provides expertise in the differential identification, enumeration, and interpretation of human cells from respiratory tract specimens.
Michael W. Konstan, M.D., Director
Jay Hilliard, B.S., CCRP, Technical Director
The TDN Center for Pediatric Lung Function provides expertise on performance of lung function testing in infants and preschool children for CF clinical trials. Measures used include infant lung function tests, preschool spirometry, oscillometry, respiratory inductance plethysmography, and multiple breath washout.
Jessica Pittman, M.D., MPH, Associate Director
The TDN Center for Sweat Analysis offers expertise in the use of sweat electrolyte analysis as a specialized outcome measure of CFTR protein function in CF clinical studies. Services and assays include training and certification in sweat collection, and centralized analysis of sweat sodium and chloride.
Edith Zemanick, M.D., M.S.C.S., Laboratory Director
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