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.
A group of care centers that have expertise in nontuberculous mycobacteria research and treatment have formed a consortium to conduct studies that seek to standardize the diagnosis and treatment of the bacterial infections.
Nontuberculous mycobacteria (NTM) infections in cystic fibrosis are difficult to treat and becoming increasingly common. Therefore, it is one of the Cystic Fibrosis Foundation's highest priority antimicrobial areas. Common NTM infections in people with CF include Mycobacterium abscessus (M. abscessus) and Mycobacterium avium complex (MAC). Recognizing the need to better understand how to diagnose and treat these infections, the Foundation developed the NTM Consortium, a network of 10 care centers with expertise in studying and treating NTM infections and relatively large populations of individuals infected with NTM.
The consortium is facilitating two large studies to standardize the diagnosis and treatment of NTM infections in CF. The current diagnosis and treatment plans are based on published clinical practice guidelines sponsored by the Foundation and the European Cystic Fibrosis Society. People with CF with at least one positive NTM culture in the past two years are eligible for the PREDICT study. Those who enroll in this study have multiple respiratory cultures over time and undergo routine testing. Clinicians follow a decision tree to evaluate and treat other conditions that could be affecting the patient's health. Then, they determine if a patient meets diagnostic criteria for NTM lung disease and is likely to benefit from therapy. The determination of NTM lung disease is the trigger to discuss antimicrobial treatment and enrollment in the PATIENCE study.
In the PATIENCE study, clinicians use a detailed plan -- or protocol -- based on consensus recommendations to treat patients and monitor them to see how well the treatment plan works to reduce their symptoms and clear the NTM from the lungs. This standardized treatment approach will serve as a comparison for new antibiotics and treatment protocols.
The consortium of sites with expertise in NTM also creates a network of clinics where potential NTM therapies can be tested in future clinical trials. Currently, some sites within the consortium are seeking people with CF with NTM infections as volunteers for a clinical trial of inhaled molgramostim. Sites within the consortium will also participate in future studies testing novel antimicrobials in patients with NTM infections.
In 2018, about 13 percent of people with CF in the Foundation's Patient Registry cultured positive for NTM, and over the past five years 20 percent of those tested have had at least one positive culture. However, most people who have NTM found in their respiratory cultures do not go on to have NTM-related health problems.
NTM disease is a condition that clinicians diagnose in an individual when NTM is present in more than one culture, and the NTM appears to be causing illness -- weight loss, decreased energy, chronic fevers, and night sweats -- or a more rapid decline in that person's lung health than would be expected normally in CF. The diagnosis can include a computed tomography (CT) scan of the chest to look for a characteristic picture that suggests the infection is causing damage to the lungs. (Even with a CT scan, it can be difficult to distinguish NTM lung disease from the normal findings seen in CF lung disease in people who do not have NTM lung disease.)
NTM are resistant to many antibiotics and when treatment is required, it can be complicated and long, sometimes involving months of IV antibiotic treatment. Usually three or four antibiotics (IV, nebulized, and oral) are used together in combination to treat NTM. Unfortunately, treatment is not always successful, and there must be close monitoring to avoid significant side effects, such as hearing loss and problems with kidney function.
The following sites are part of the NTM consortium. Additional sites may be added in 2020.
University of Michigan, Michigan Medicine Pediatric Care Center
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