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.
Choosing to volunteer in a cystic fibrosis study is a personal decision. Through a process called informed consent, people with CF and their families can find out all the information they need, get answers to their questions, and learn key facts about a clinical study.
Clinical trials, a type of clinical study that tests potential drugs and therapies in people with cystic fibrosis, are a major part of CF research. These trials help researchers understand how potential treatments work in people with CF and whether they are safe and effective.
The informed consent conversation can help you better understand the clinical trial if you choose to volunteer. You should feel comfortable asking the research team questions or speaking directly with the CF doctor.
It is your right to know everything about your or your child's role in a clinical trial. To help you make a decision about participating in a CF trial, the research team will first discuss a potential trial with you. If you are interested in receiving more information, the team will give you an informed consent form that explains the clinical trial in greater detail.
Every clinical trial is different. The informed consent form will include information about the specific trial you are considering, including the trial's purpose, how long it will last, and the responsibilities of participants.
The consent form will also explain possible benefits and risks.
A parent or legal guardian will need to give permission for a child under 18 years old to participate in a clinical trial. Children usually must give their own assent, as well. The assent form will explain the trial in language that is appropriate to the child's age. Asking for their assent allows children and adolescents to play a decision-making role in their health care.
Informed consent is more than signing a form. It's a learning process that continues throughout the clinical trial. Occasionally, new information becomes available or changes are made to the study that may affect your decision to participate. Should this happen, it is your right to be notified, and you will receive a new informed consent form. If you wish to continue in the trial, you will be asked to review and sign this new form after all your questions are answered.
The leader of the CF research team (or principal investigator, usually a CF doctor) or the trial's research coordinator will start the informed consent discussion by giving you information about the trial and addressing any questions or concerns you have. Next, the research team will carefully go through the informed consent form with you and explain how the information relates to the clinical trial in which you are interested.
You can take the informed consent form home to give yourself more time to read about and consider the clinical trial.
When you are ready and feel comfortable that your questions have been answered, the research team will have you sign and date the informed consent form, showing that you fully understand the trial. Your signature indicates that you wish to volunteer or give permission for your child to participate.
Remember: An informed consent form is not a contract. You can stop participating in a clinical trial at any time. If you decide that a particular trial is not a good fit for you or your child, your decision will not affect the care you receive at your CF care center.
Before the clinical trial begins, you will meet with the study's CF doctor or research coordinator to learn more about the trial. Here are some tips to help you prepare:
The informed consent process will help you judge whether a CF study is right for you or your child. Use these tips to help you begin talking with your CF care team about CF clinical trials in which you are interested.
Remember: The informed consent process will continue when you are enrolled in a clinical trial. The trial team will keep you informed, and you should always feel free to ask questions.
We call people with CF who participate in clinical trials, and all those who support them, trailblazers. Help us blaze a trail to better treatments and a cure for CF.
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Help us blaze a trail to better treatments and a cure for CF. Find a clinical trial that may be right for you.
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