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.
With a record 45 clinical trials either ongoing or starting up in 2016, research coordinators and principal investigators throughout the Therapeutics Development Network took time out in San Antonio recently to discuss clinical research and put attendees through boot camp.
Patty Burks, M.A., RN, CCRC
May 5, 2016
Speaker Series: Connecting Foundation Employees to CF Community Members
Googling CF is Not Googling Me
This year is projected to be the busiest yet for our Therapeutics Development Network (TDN), the largest cystic fibrosis clinical trials network in the world. With a record 45 clinical trials either ongoing or starting up in 2016, we had more than 400 investigators and research coordinators from every TDN care center come to San Antonio April 11-12 for our annual spring meeting. They came to learn about upcoming trials and receive training.
Because of the tremendous increase in clinical trials, Cystic Fibrosis Foundation Therapeutics Inc. provided funding to hire and train an additional 87 research coordinators to handle the workload.
Although many principal investigators and research coordinators have been involved in CF research for a long time (64 of the attendees have been in the field for more than 20 years!), this influx of new talent got me really excited to join a team in developing the TDN's first CF Research Boot Camp in 10 years. We needed to get these new coordinators up to speed!
After the official meeting, 125 attendees with less than two years of experience in CF clinical trials stayed an extra day for the boot camp.
As I liked to joke with the audience, boot camp was all of the carb loading and none of the pushups. (There were a lot of snacks…)
Attendees heard presentations on important topics such as how to select the right studies for their center, how to make sure that patients really understand the study when they are signing up to be part of it, and how to make sure that researchers are protecting the safety of patients in their study.
Attendees also received hands-on experience as they worked together in small groups reviewing protocols (plans for clinical trials), discussing how to make informed consent documents easier to understand and designing study budgets. Friendships were forged as coordinators and investigators networked with their counterparts from other sites.
Sean Ryan, a respiratory therapist, was one of those researchers. He has been a research coordinator for 18 months at Stanford University in northern California.
Sean said that he decided to switch careers when the research manager approached him one day and started talking about an opening for a research coordinator position. The manager asked Sean a pointed question that still resonates with him: “Do you want to save a few lives or a lot?”
Sean said he knows he made the right decision to change careers. He feels very fulfilled in his new job: “Ever since then, I've loved it. I love what I do. I love the patients, the families.”
It's that type of passion that I find so inspiring among not only the new crop of research coordinators, but also the veterans of the TDN. We all left the meeting feeling reinvigorated to tackle the clinical trials in progress, as well as the more than 20 others that are slated to start this year.
Patty Burks, M.A., RN, CCRC
Director of Clinical Trial Affairs, Cystic Fibrosis Foundation
Prior to joining the CF Foundation, Patty served as a CF research coordinator at Washington University School of Medicine in St. Louis, Mo. There, she was part of the team responsible for running CF clinical trials and had the great joy of working with children and adults with CF. At the Foundation, Patty's work focuses on supporting clinical research teams across the country so they can continue to provide high-quality, timely conduct of clinical trials.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
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