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.
Our goal is to educate policy makers about the needs of people with cystic fibrosis so that they make smart decisions about CF-related research, treatment, and access to care.
We recognize the value of tapping into the expertise that only people with CF and their families have. We invite you to share insights to help improve and develop programs and services that support the daily lives of people with CF.
Our mission is to find a cure for cystic fibrosis and improve the quality of life for those living with the disease. We can't do it alone. Help us add tomorrows by giving today.
In addition to working for a cure, the CF Foundation supports programs and policies to improve the lives of people with CF. Help us by raising awareness of CF, participating in a fundraising event, or volunteering with your local chapter.
When you are weighing whether to join a clinical trial, you should consider logistics: time commitment and payment for time and expenses. The most important way to prepare is to stick with your treatment plan to help keep yourself healthy.
To participate in a clinical trial, you should make sure you or your child are doing all you can to maintain your health, including doing your treatments and following your CF care team's advice. Researchers may be reluctant to include you or your child in a study if they are concerned that you may not be able to follow the study's requirements. Take care of yourself, get your flu shot, and don't smoke.
Ask your research team members what the time commitment is for the clinical trial, so you know how many visits you will need to make, for example. Some studies will require a quick blood draw, while others may require hours of extensive testing. Don't forget to add in any travel time.
Most research teams are willing to coordinate with your CF care team so that you or your child can do the study tests and a regular appointment on the same day.
You will not be charged a fee to participate in a clinical trial, but you may incur expenses -- such as meals, mileage, and parking -- as a result of participating. In some clinical trials, volunteers receive compensation for participating. This is a decision made by the trial sponsor, who is paying for the study. If you are considering participating in a clinical trial, you will receive information about compensation during the informed consent process before the study begins.
Compensation can vary and is usually given to pay for your time and to help offset the costs of participating. Some studies offer additional reimbursement for expenses. It is important to ask the research coordinator if these costs will be covered before the trial begins. Some expenses, such as child care, may not be covered.
“Jordan enjoys the studies that offer compensation because we allow her to keep the money. She loves to find the 'perks' of having CF.”
-- Rebeca Marquez, mother of Jordan, a child with CF, who has participated in five clinical trials
For trials within the Therapeutics Development Network, the most recent guidelines for compensation for a participant (or a parent who needs to take time off of work to bring a child in for a study visit) suggest a maximum of $30 an hour, up to a maximum of $250 for a single visit. These amounts may be adjusted in areas where the cost of living is higher than the rest of the country.
The Cystic Fibrosis Foundation spearheaded an effort to ensure that those with rare diseases such as CF can receive compensation for participating in clinical trials without losing critical benefits. The Ensuring Access to Clinical Trials Act allows participants in clinical trials for rare disease therapies to receive up to $2,000 a year without that compensation affecting their eligibility for Supplemental Security Income or Medicaid benefits.
In some instances, participants may need to fly to participate in a clinical trial. This is usually if the trial is more than 200 miles away. Normally the study sponsor will cover the cost. For minors, the study sponsor will pay for the participant and one parent or guardian. Consideration may be given to offsetting the travel costs of a travel companion for adults.
Additional expenses related to traveling long distances, such as housing, meals, and local transportation, also will usually be covered.
The IRS requires research institutions to report compensation to clinical trial participants if the amount is $600 or more a year. Your study site will send you IRS Form 1099 as a record of this payment for you to include with your tax return. Reimbursement of expenses is not considered compensation.
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