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.
The Cystic Fibrosis Foundation offers a broad range of funding opportunities to support academic and industry investigators to pursue research on topics relevant to cystic fibrosis. Each application undergoes a rigorous scientific review process before funding is allocated.
The Cystic Fibrosis Foundation provides many funding opportunities to both academic investigators and industry partners to conduct research to better understand cystic fibrosis and to develop potential treatments. Funding opportunities can be found on
our website or on proposalCENTRAL.
Subject matter experts review applications and assign priority scores based on various scoring criteria depending on the application type. For certain clinical research programs, people with CF and their families also review the applications and provide
Funding Opportunities and Research Priorities
The Foundation has standing requests for applications (RFAs) that accept proposals on a broad range of CF-relevant topics, as well as special topic RFAs that get released throughout the year. A list of research priorities can provide guidance on what research topics are of interest to the CF Foundation and the CF community. Awards and grants are arranged in the following categories:
Investigators can contact the Foundation to find out more about specific programs and which funding mechanism is most appropriate for their specific project.
The Application and Review Process
The application process includes multiple steps and can take anywhere from four to eight months from application submission to notification depending on the RFA. Some RFAs may require an approved letter of intent (LOI) prior to full application submission.
The Review Process
The CF Foundation uses a rigorous review process called peer-review to select grants for funding. Peer-review is a grant review process used by many research funding organizations, including the National Institutes of Health. At the Foundation, the peer-review
process may be conducted by one of several review committees or by an ad hoc committee set up for a specific RFA. These committees may be composed of researchers, clinicians, biostatisticians, and/or community representative reviewers depending on
the type of applications they are reviewing. Each committee includes reviewers with expertise in areas related to CF care and treatment and/or subject matter related to the specific applications being reviewed.
Below are the standing review committees:
For special topic or targeted RFAs, ad hoc review committees may be formed to ensure the sufficient and thorough evaluation by the appropriate subject matter experts.
Once an application has been submitted, it will generally be assigned to a committee for review. The role of our review committees is to evaluate the proposal on its scientific merit, relevance to the Foundation's mission, and other criteria relevant
to the specific RFA. Career Development and Training Awards include additional evaluation criteria for the reviewers to consider, such as the individual candidate, training plan and environment, and mentorship.
In some cases, a review committee may also participate in a review meeting where applications are discussed among the larger review committee. During these meetings, the reviewers assigned to the application will provide their scores for the application,
provide a brief summary of the proposal, and discuss any relative merits and weaknesses noted. After the assigned reviewers have all presented, the application is opened up to the entire review committee for discussion. At the end of discussion, all
reviewers will provide their scores for the application.
The Foundation makes funding decisions based on the recommendations of the review committee, our current research portfolio, and the application's relevance to the CF mission. Once funding decisions are made, the Foundation Grants Office will notify applicants
of their status and will provide blinded reviewer critiques.
Pharmaceutical companies and biotechnology organizations can learn more about funding opportunities and other means of support the Foundation offers such as the Therapeutics Development Award Program,
the Path to a Cure Initiative, and the Infection Research Initiative. For possible funding for a product or developmental candidate that
is relevant to CF the initial proposal usually should come from submission of an Industry-specific LOI to see if there is interest on the part of the Foundation. The LOI must be submitted through proposalCENTRAL.
If the LOI is accepted, then the company or biotech is invited to submit a full application for a Therapeutic Development Award. External independent
reviewers will evaluate the application and provide a scientific merit score. If the full application scores well, aligns with the mission of the CF Foundation, and there is need within the Foundation industry portfolio for such a product, a Therapeutic
Development Award is given either in full or amended based upon external and internal evaluation of the project specific aims. Subsequent to the award, the Foundation and awardee negotiate a contract agreement with an award payout that is typically
milestone based. Note that awardees are required to provide matching funds equal to the amount provided by the Foundation.
Regarding non-funding support, the Foundation can provide patient samples, such as sputum, and bronchial epithelial cells (either wild type or with specific mutations in the CFTR) to industry or biotech companies for use in their development plan. The
Foundation also can help these organizations access other disease models for testing or make introductions to leaders in the CF research community for guidance or recommendations for their product development.
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