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.
Therapeutics Development Network (TDN) staff work daily to promote safety and quality in CF clinical research. The TDN Coordinating Center is the hub of communications with sponsors and network sites.
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Introduction to the Therapeutics Development Network
Through efficient study design, optimized clinical trial execution, and high-quality data, the Therapeutics Development Network (TDN) helps speed the delivery of new and better therapies to people with cystic fibrosis.
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Why Work With the TDN
Therapeutics Development Network investigators and research staff work every day to promote quality, safety, and efficiency in cystic fibrosis clinical research and help speed the delivery of new and better therapies to people with CF.
TDN Sponsor Engagement
Effective clinical development plans and good study design can save sponsors and investigators time and money, leading to faster development of potential new therapies for people with cystic fibrosis.
TDN Protocol Review Process
The Therapeutics Development Network's (TDN) Protocol Review Process ensures optimum safety and quality in cystic fibrosis clinical trial protocols.
Clinical Research Executive Committee
The Clinical Research Executive Committee (CREC) assesses how a specific protocol fits within the overall clinical research priorities of the cystic fibrosis community and assigns it a rating.
Therapeutics Development Centers
The Therapeutics Development Network includes 92 clinical research centers, called Therapeutics Development Centers.
National Resource Centers
Through standardization and careful attention to quality, the Therapeutics Development Network's National Resource Centers help ensure cystic fibrosis clinical trials are safe and effective and yield high-quality data.
Search the Pipeline
We're attacking cystic fibrosis from every angle. Click on the interactive pipeline to learn more about CF drugs in development or already in use by patients.
Data Safety Monitoring Board
The primary responsibility of the independent Data Safety Monitoring Board is to protect the safety and welfare of people who participate in clinical trials approved by the Therapeutics Development Network.
TDN Coordinating Center Study Support
In addition to serving as a hub for communications, the Therapeutics Development Network Coordinating Center, located at Seattle Children's, can also provide a variety of study support.
With more than 70 chapters and offices across the country, it’s easy to find and join a local Cystic Fibrosis Foundation chapter near you.
Cystic Fibrosis Foundation
4550 Montgomery Ave. Suite 1100 N Bethesda, MD 20814
301-951-4422
800-344-4823 (toll free)
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