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 National Resource Centers provide study sponsors and investigators centralized expertise in outcome measures for CF clinical research. These centers also aim to advance new biomarkers and outcome measures that will be critical to our understanding of CF.
Specialized procedures are often needed to measure outcomes in CF clinical trials, including laboratory-based measurements, such as sweat chloride, microbiologic endpoints, and inflammatory markers; and interpretive outcomes, such as multiple breath washout/lung clearance index and nasal potential difference.
Currently there are two types of National Resource Centers (NRC):
Personnel at each NRC are available to consult with study sponsors and investigators about the use of these specialized CF outcome measures and provide related support for specific studies (including for pre-clinical and translational research).
Services offered may include, but are not limited to:
Contacting the NRCs 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.
This NRC consists of investigators and laboratories with unique skills and knowledge in studying nontuberculous mycobacteria (NTM). The goal of this core is to better understand NTM and to improve its diagnosis and treatment in CF. The NRC will advance innovative techniques and new technologies that bypass the current limitations of sputum cultures, which are insensitive and increasingly difficult to obtain. Services include consultation on preclinical NTM therapeutic development, provision of CF NTM isolates, in vitro testing of candidate antibiotics on well-characterized CF NTM isolates, novel models of NTM infection, analyses of NTM whole genome sequencing databases, protein structural modeling, quantitation of NTM in samples, phylogenetic analysis of NTM isolates, biomarker development, pharmacokinetics/pharmacodynamics assays of sputum, and associated training of these techniques to qualified investigators and trainees.
Site: National Jewish Health, Denver
Director: Jerry Nick, MD
Charles Daley, MD, Professor of Medicine, National Jewish Health, Denver
Michael Strong, PhD, Associate Professor, National Jewish Health, Denver
Rebecca M. Davidson, PhD, Assistant Professor, National Jewish Health, Denver
This NRC develops and provides special and clinically relevant microbiological tests and resources for CF research and therapeutics development, including clinical specimens and microbial isolates, uncommon culture media and conditions, and molecular (DNA-based) microbiological identification and quantitation. This core will also serve as a repository of the specimens and isolates collected by CF studies; as a facility that can perform existing, nonstandard tests (such as sputum binding and in vitro susceptibility testing for new candidate treatments); and as a laboratory that develops new approaches and resources and performs new tests, such as DNA-based analyses.
Site: University of Washington, Seattle
Director: Lucas Hoffman, MD, PhDlhoffm@uw.edu
Donna Prybell, Core Administratordprybell@uw.edu
Stephen Salipante, MD, PhD, Sequencing Subcore Director
Rafael Hernandez, MD, PhD, Clinical Isolate Subcore Director
The Cincinnati Children's Hospital Nasal Cell Culture Core for Outcome Measure Advancement focuses on optimizing and advancing laboratory models based on human nasal cells. The overarching goal of this core is to establish and validate a national system for collection and testing of human nasal epithelial cell-based models to support translational CF clinical care and research trials. This includes testing of cystic fibrosis transmembrane conductance regulator (CFTR) therapies (including modulators and nucleic acids) and other strategies to activate or inhibit ion transporters relevant to CF.
Site: Cincinnati Children's Hospital Medical Center
Director:John Brewington, MD
Alicia Ostmann, Laboratory Manager
Rory O'Shaughnessy, MPH, Program Coordinatorrory.email@example.com
This NRC will work to validate the different methodologies used in particle tracking micro-rheology (PTMR) to determine the optimal experimental protocols for researchers to use to characterize CF mucus. They will further develop the training materials, tracking and analysis software, and back-end technical support to assist other groups in implementing PTMR as a biomarker of the mucus burden to CF patients. Goals of this NRC are to develop a standardized protocol for all labs to use to ensure consistent and comparable results between research groups and to assist other CF research groups in the implementation of this standard protocol for biophysical characterization of clinically relevant specimens onsite.
Site: The University of North Carolina at Chapel Hill
Director: David Hill, PhDdbhill@med.unc.edu
Matthew Markovetz, PhD, Research Associatematthew_markovetz@med.unc.edu
The Center for Biochemical Markers provides expertise in the measurement of biomarkers of inflammation and injury (e.g., proteases, antiproteases, cytokines, oxidants) and measures of nutritional status (including vitamin and antioxidant levels) in blood, sputum, bronchoalveolar lavage fluid, stool, and urine specimens. This includes well-validated platforms and systems for performing multiplex assays.
Site: Children's Hospital Colorado and University of Colorado Anschutz Medical Campus
Director: Scott D. Sagel, MD, PhD
Rebecca Baldermann, Laboratory Manager
The Center for CF Microbiology provides best-practice CF clinical laboratory microbiological services and consultation to develop and support CF clinical trials. The laboratory provides expertise in the isolation, quantitation, identification, and antibiotic-susceptibility testing of CF pathogens in respiratory tract samples. The center works to develop and validate laboratory methods, establish protocols for CF microbiology, and obtain high quality microbiology data for clinical trials.
Site: Seattle Children's Hospital
Director: Lucas Hoffman, MD, PhD, Laboratory Directorlhoffm@uw.edu
Anne Marie Buccat, MS, Technical Director
The Center for CFTR Detection specializes in the development and upkeep of harmonized standard operating procedures (SOPs), training, performance, and interpretation of nasal potential difference traces and other measures of CFTR detection in CF clinical trials. These include intestinal current measurements and lower airway potential difference measurements
Site: University of Alabama at Birmingham
George M. Solomon, M.D.
Steven M. Rowe, MD, MSPH, Associate Director
Heather Hathorne, PhD, Manager, Cystic Fibrosis Clinical Research Unit
This Core Laboratory for Integrative Immunodiagnostic Cytology provides expertise in quantitatively defining the CF patient inflammatory response, focusing on cells from the respiratory tract, including expectorated and induced sputum. The core provides support for the needs of the Therapeutics Development Network, industry sponsors, and CF clinical researchers with consultation services to enhance CF clinical research through experience in trial design, protocol design, outcome measure selection, safety measures selection, resource for training and data review as defined by study-specific needs. The core will also provide immunodiagnostic expertise through advanced analysis of specimens, better defining the cellular phenotype of CF inflammation.
Site: Case Western Reserve University
Directors:Tracey Bonfield, PhD, D(ABMLI)
Kimberly McBennett, MD, PhD, FACP
The Center for Sweat Analysis offers expertise in the collection and analysis of sweat electrolytes, an outcome measure of CFTR protein function in CF clinical studies. Services and assays include training and certification in sweat collection, centralized analysis of sweat sodium and chloride, and consultative services to investigators interested in sweat electrolyte measurements.
Director:Edith Zemanick, MD, MSCSedith.firstname.lastname@example.org
Stacey Martiniano, MD, MSCS, Associate Directorstacey.email@example.com
Elinor Towler, Database Manager
Mary Cross, RRT, Research Coordinatormary.firstname.lastname@example.org
The Colorado NTM Core Clinical Research Service NRC consists of investigators and laboratories with unique skills and knowledge in studying NTM. Their goal is to provide technical support to studies that aim to improve the diagnosis and treatment of NTM in CF. This NRC offers expertise in clinical study design, sample collection, specialized testing and banking of NTM, as well as a range of research tools that are needed to support and improve the success of clinical trials focused on this infection.
Jerry Nick, MD
Charles Daley, MD, Professor of Medicine, National Jewish Health, Denverdaleyc@njhealth.org
Rebecca M. Davidson, PhD, Assistant Professor, National Jewish Health, Denver
The goal of the Cystic Fibrosis Microbiome Analysis Core is to facilitate best practices in microbiome research for the CF research community. The core has developed and will provide SOPs for all steps essential for microbiome analysis of CF clinical samples, including sample collection and processing, bioinformatics, and biostatistics. In addition, they will provide expert consulting and training in all phases of microbiome-based CF projects.
Site: Children's Hospital Colorado and University of Colorado School of Medicine
Jonathan Harris, PhDjonathan.email@example.com
Dan Frank, PhD, Technical Consultant
Charles Robertson, PhD, Bioinformatics Lead
Brandie Wagner, PhD, Biostatistics Leadbrandie.firstname.lastname@example.org
This NRC supports the development and conduct of multicenter mucociliary clearance (MCC) studies by providing training and technological advances, disseminating expertise, and facilitating conduct of studies using the MCC endpoint. Service aims include elevating technical expertise and standardization and developing improved MCC study methodologies for dissemination to new sites.
Scott Donaldson, MD
William Bennett, PhD, Professor of Medicine, Co-Director of NRC
The North American Multiple Breath Washout (MBW) Resource Center supports the development and upkeep of SOPs, training, and interpretation of MBW/lung clearance index testing in CF clinical research. The program is developing enhanced online learning materials to train more operators to correctly perform the MBW test, as well as computer software that can determine whether an MBW test is done properly. This will enhance the conduct of future CF trials and also potentially translate the use of this lung function test for routine monitoring of lung function.
Site: The Hospital for Sick Children
Felix Ratjen, MD, PhD
Renee Jensen, Respiratory Therapistrenee.email@example.com
MBW center contact:
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