Learn about cystic fibrosis, a genetic lung disorder that affects the 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.
Our goal is to educate policy makers about the needs of people with cystic fibrosis so that they make smart decisions about CF-related research, treatment, and access to care.
We recognize the value of tapping into the expertise that only people with CF and their families have. We invite you to share insights to help improve and develop programs and services that support the daily lives of people with CF.
Our mission is to find a cure for cystic fibrosis and improve the quality of life for those living with the disease. We can't do it alone. Help us add tomorrows by giving today.
In addition to working for a cure, the CF Foundation supports programs and policies to improve the lives of people with CF. Help us by raising awareness of CF, participating in a fundraising event, or volunteering with your local chapter.
The Insight CF Registry Research Project gathers questions from the cystic fibrosis community and uses data in the Cystic Fibrosis Foundation Patient Registry to answer them.
The Insight CF Registry Research Project is the Cystic Fibrosis Foundation's first community-driven research initiative. We are asking the CF community to partner with the Foundation to include their voice in helping to set our research agenda.
The CF Foundation Patient Registry collects health-related information of people with CF who receive care at CF Foundation-accredited care centers. There is currently a process in place for researchers to be approved to use the Registry data to find answers to their questions, but the CF community also has questions -- and Insight CF is a way for your questions to be answered.
We received more than 400 submissions during the first round of Insight CF submissions from October 2016 - January 2017. We then worked with a collaborative team of community members to narrow them down to a list of 22 feasible research questions. In June 2017, we asked the CF community to vote for the questions that would be the most relevant and informative if they were answered. We are in the process of tallying the votes and those questions with the most votes will be studied. It can take two to three years to answer a research question, so prioritization is key to ensure we are answering the most meaningful questions first.
We received more than 400 questions from the community on a broad range of topics during our first round of Insight CF submissions.
The categories were:
All questions submitted through Insight CF were reviewed by a collaborative team that includes members of the Patient and Family Research Advisory Committee, which is made up of adults with CF, parents and relatives of individuals with CF, researchers, and clinicians.
From the more than 400 questions we received, 150 were research questions that could potentially be answered using CF Foundation Patient Registry data. The collaborative team set aside questions that had already been researched and then grouped remaining similar questions together to arrive at a list of 22 questions for the community to help prioritize for research. Where information already exists, it will be shared to help inform web content.
The questions that fell outside of the 150 viable research questions fell into two categories:
Once a research question has been selected for study based on votes from the community, we will assemble a multidisciplinary research team, develop a study design and analysis plan, submit a plan by an Institutional Review Board to ensure the protection of the rights and well-being of participants, conduct the analyses, and develop materials for dissemination. Timing will depend on the complexity of the chosen question, resources, and personnel needed.
Results will be disseminated to the community through CFF.org and we will also submit results for publication in scientific journals. For examples of recently published scientific work on CF, the European CF Society publishes CF Research News, which contains lay summaries of articles that were published in the Journal of Cystic Fibrosis.
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