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.
The Mutation Analysis Program provides free genetic testing to people with cystic fibrosis to help identify their CF gene mutations.
The Mutation Analysis Program (MAP), funded by the Cystic Fibrosis Foundation and administered by The John Hopkins DNA Diagnostic Laboratory (JHDDL), is a free and confidential genetic testing program for people with a confirmed diagnosis of cystic fibrosis. The program provides genetic testing (genotyping) and follow-up testing as needed to people who have not yet been tested to determine their CF mutations, or who have been tested previously but still have one or more unknown mutations.
Genetic testing can be used to tell if a person carries a mutation of the CF gene. The test looks at a person's DNA (genetic material), which can be taken from cells in a blood sample or from cells that are gently scraped from inside the mouth. The MAP only uses blood samples for its genetic testing program.
By knowing their CF mutations, your patients can make informed decisions with you -- their health care provider -- about the most appropriate treatment options for them.
For more information about MAP, please contact JHDDL at 410-955-0483.
For providers, please contact JHDDL for screening and to obtain the enrollment form. Completed forms may be faxed to 877-792-3627. Blood samples may be shipped to:
Johns Hopkins Genomics - DDL
1812 Ashland Ave.
Sample Intake, Room 245
Baltimore, MD 21205
What are the eligibility requirements for participating in the MAP?
Individuals must have a diagnosis of CF and have not yet had genetic testing to determine their CF mutations, or have been tested previously but still have one or more unknown mutations. There are no income or insurance requirements.
Who covers the cost of the genetic testing?
The cost of the genetic testing will be covered under a grant provided by the CF Foundation. However, the patient or CF care center is responsible for the cost of the blood sample and for shipping and postage for mailing the sample to the lab.
Where can my CF patient get a blood sample taken?
Patients may get their blood drawn at their care center lab, if available. Otherwise, it is at the provider's and patient's discretion to use a lab that is most convenient and affordable.
Can a person participate in this program more than once?
No. People may participate in the MAP only once.
What types of testing are offered?
All CF patients enrolled in the MAP will receive genotyping for CFTR mutations. If one or more mutations remain unknown after genotyping, patients may receive sequencing or deletion/duplication testing as needed.
Will the patient's name and test results be released to the public?
No, patients' names and corresponding test results will not be released to the public. Test results will be released only to the referring doctor or CF care center.
When can providers expect test results?
In order to allocate funds in the most efficient way, testing occurs in batches. It can take up to 90 days to receive genotyping results, and additional time if further testing is needed.
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