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.
Patient safety is a priority in clinical trials, and special precautions are taken to ensure children's safety. It is important to involve your child in the decision-making process about whether to join a trial.
Medical treatments that have been tested in adults often act differently in children. Medications require different dosages and sometimes produce different
side effects in children than adults. More studies are needed focusing on children's health to develop treatments, drugs, and devices specific to children.
Many different people are monitoring your child's safety in a clinical trial, just as they monitor the
safety of adults in
clinical trials. Clinical trials involving children must follow all the safety precautions in adult clinical trials. In addition, researchers must first collect and review
safety data in adults before testing adolescents and then, finally, children.
Parents have to give legal consent for their child to participate in a research study. Children also can be asked to assent, or agree, to participate, although some studies do not require assent. This means that children are given basic facts about a
research study and are asked to be part of the decision. Children as young as 7 years old can be asked to give assent.
If you are thinking of enrolling your child in a study, you may want to ask how your child feels about it. Some children will want to be part of the process, while others may not. Some may be uncertain or afraid, worried about pain or concerned about
how it will affect school or friendships. Some will be interested in helping other kids.
“My kids are very vocal about their interest in participating. They don't want to see another child go through [the sickness that] they went through.”
- Elizabeth Bishop, mother of 10-year-old twins with CF
At any age, the important thing is that your child is comfortable and his or her questions are answered. When children are asked if they want to join a study, it shows that you respect them. Children understand a lot, and it's important that their voices
The research team may be able to help if you and your child disagree about participation. Some studies have advocates and ethics experts involved who can help with questions.
Your study team is prepared to answer your questions, so don't hesitate to ask the principal investigator or the research coordinator questions. There are no bad questions. Some questions you may want to ask include:
Write down your questions before you talk with your doctor or members of the research team to make sure you remember to ask them all. Also, try to write down the answers or record them with your smartphone, so that you can review them whenever you want.
As a parent, you may be concerned about the cost of participating in a clinical trial. The sponsor of the clinical trial typically covers costs so there are no fees to participate.
informed consent document, a section on
compensation will tell you how much money you will get to participate.
The compensation is usually given to pay for your time and to help offset the costs of participating.
Some studies offer additional reimbursement for expenses such as meals, mileage, and parking. If you anticipate other costs, let your research team know ahead of time to see if they can reimburse you for those expenses.
Here are some questions you may want to ask:
To encourage participation, care centers and researchers often can work together to coordinate schedules so that regular
care center visits can take place at the same time as the research visit. Often appointments can be moved to the beginning
or end of the day to accommodate your work day.
You should expect that your child will undergo more testing than would be done during clinical care visits because researchers must document changes in your child's health. These tests could include blood tests and extra breathing tests.
Your child's care center will continue to be responsible for your child's primary care. If your child experiences any problems, you should let your
care team and the research coordinators know.
When a study ends, it may take a while for the researchers to analyze data and publish results. If your child was testing a medication, he or she may have to stop the study medication at the end of the trial unless there is an open-label extension to
the trial, or the drug becomes approved by the
U.S. Food and Drug Administration (FDA).
open-label extension study means the doctors and participants know which treatment is being provided. Participants are invited to enroll, so that additional safety information
can be gathered about long-term use while the FDA reviews the treatment for approval.
We call people with CF who participate in clinical trials, and all those who support them, trailblazers. Help us
blaze a trail to better treatments and a cure for CF.
In this webcast, Warren and Lyndsey Love discuss why they enrolled their son, what types of questions and concerns they had initially, and how care center staff helped them fit the trial into their schedules. Dr. David Orenstein, a pediatric pulmonologist
and CF doctor, talks about the layers of safety built into the study.
Read a short story for school-age children about
one girl's experience joining a clinical trial.
Learn more about children and clinical trials on the
Children and Clinical Studies website launched by the National Heart, Lung and Blood Institute, a part of the National Institutes
Follow Us On
Help us blaze a trail to better treatments and a cure for CF. Find a clinical trial that may be right for you.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails