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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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 Success with Therapies Research Consortium facilitates the clinical study of interventions to improve day-to-day adherence and cystic fibrosis disease self-management to optimize health outcomes and quality of life.
Although there are many effective treatments for cystic fibrosis, people living with the disease often struggle to balance their lives with managing their daily care.
The average CF treatment regimen can take up to two hours or more per day. Financial, social, and psychological issues make it even more difficult for people with CF to maintain their prescribed treatment plan. Recent
research has shown that consistent management of a daily treatment plan is crucial for better health; it is
associated with better lung function, fewer pulmonary flare-ups, and even lower healthcare costs. Yet, the heavy treatment burden for people with CF poses significant challenges.
Recognizing that these barriers can prevent people from fully benefiting from their prescribed therapies, the Cystic Fibrosis Foundation is addressing the complexities of adherence with a multi-pronged approach. To help people with CF and their families
better sustain daily care regimens, the CF Foundation created Partnerships for Sustaining Daily Care (PSDC), a strategic initiative to support CF care by encouraging dialogue between care teams and people with CF and their families, to identify barriers
to daily care and find solutions together.
Dr. Kristin Riekert explains how the Success with Therapies Research Consortium is working to make doing daily cystic fibrosis therapies easier.
The Success with Therapies Research Consortium (STRC) is a part of this initiative and aims to test interventions that are effective, practical, measurable, scalable, and sustainable. Formed in 2014, it is co-chaired by Kristin Riekert, Ph.D., from Johns
Hopkins University, and Gregory Sawicki, M.D., M.P.H., from Boston Children's Hospital. Drs. Riekert and Sawicki lead a group of investigators to identify innovative ways to support people with CF in managing their disease. STRC investigators have
diverse backgrounds in medicine, psychology, clinical research, and health economics, and they represent adult and pediatric CF programs throughout the United States. They are:
People with CF, their families, and their care teams are involved at all levels of the STRC. They participate in consortium activities, such as consulting on research questions and study design. They also review study protocols. The largest influence
from the CF community comes through the Steering Committee. The Steering Committee oversees and governs STRC operations and studies. Currently, there are two adults with CF and one mom of a 23-year-old with CF serving on the Steering Committee. These
Committee members provide real-world insight into STRC functions.
Learn how people with cystic fibrosis and families are partnering with researchers to develop ways to make sustaining daily care easier.
The STRC investigators are supported by two core centers:
By developing and validating interventions and tools that work in the real world, these solutions are more likely to become a part of a care team's regular clinical practice and integrated into the daily care routines of people with CF and their families
without adding to their treatment burden. As part of its process, the STRC is developing a standard set of measures, which will enable investigators to evaluate a single study, as well as reliably compare between studies.
The current STRC studies are:
Dr. Kristin Riekert discusses how the STRC must make sure the tools they develop will work for people with CF before making them available to the public.
Currently, requests for proposals are open only to STRC investigators. If you are interested in learning more, please contact STRC@cff.org.
Reference to any specific product, process, or service does not necessarily constitute or imply its endorsement, recommendation, or favoring by the Cystic Fibrosis Foundation. The appearance of external hyperlinks does not constitute endorsement by the Cystic Fibrosis Foundation of the linked websites, or the information, products, or services contained therein.
Information contained on this site does not cover all possible uses, actions, precautions, side effects, or interactions. This site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
FDA-approved drug information is available at www.dailymed.nlm.nih.gov/dailymed.
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