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 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.
Since 1998, the Therapeutics Development Network (TDN) has been conducting cystic fibrosis clinical trials and has developed not only individual expertise, but also a well-established infrastructure with specialized tools, standardized processes, and centralized services.
Collaborating with the TDN gives investigators and sponsors access to resources that will help them ensure efficient study design, optimize clinical trial execution, and obtain the highest-quality data for their CF clinical trials.
Since its inception, the TDN has conducted more than 130 clinical studies for CF in a wide range of therapeutic areas, including restoring CFTR function, mucociliary clearance, anti-inflammatory, anti-infective, and nutrition-gastrointestinal.
As a result, network members have developed significant expertise in the design, implementation, and analysis of CF studies.
Sponsors and investigators can leverage this expertise for their clinical research programs by:
The TDN protocol review process provides sponsors and principal investigators with detailed feedback on their protocols and a sense of how each study fits with the research priorities of the Cystic Fibrosis Foundation. All industry-sponsored studies and multi-center interventional studies that will be conducted at TDN sites are expected to go through this review process. All studies that are accepted for conduct in the TDN will be added to the Clinical Trial Finder to facilitate recruitment of people with CF.
Additionally, the CF Foundation expects safety monitoring for all CF multicenter studies to be conducted by the Data Safety Monitoring Board.
CF Therapeutics Development Centers and other CF researchers rely on these steps to help ensure CF protocols are of the highest quality and in the best interests of people with CF.
The TDN Coordinating Center (TDNCC) can help identify possible study sites by notifying CF Therapeutics Development Centers of the upcoming study and providing the sponsor with a contact list for the centers who express interest.
Having the TDNCC send study solicitation emails assures research centers that the sponsor is working within the TDN system and may result in more timely responses.
This is a complimentary service for sponsors who participate in the TDN protocol review process. Additional support with site selection can also be arranged.
The TDN maintains a database of information regarding the current research facilities of our CF Therapeutics Development Centers. This includes most of the generic information that is typically collected as part of study feasibility questionnaires, such as patient population and Institutional Review Board (IRB) review schedules.
Using our pre-collected information about site capabilities minimizes redundant efforts for both the sponsor and the clinical sites, which can help facilitate faster site selection.
CF Foundation-accredited care centers maintain key patient data in a common database called Port CF. For most studies, the Foundation is able to load a high-level query into Port CF to help center staff do an initial screen for the number of people at their center who might be eligible for the study.
This service is available upon request and at no charge for study sponsors who participate in the TDN protocol review process.
To learn more about conducting a study with the TDN or how we can best support you, please email us at TDNCC@seattlechildrens.org.
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