The Patient Registry is an invaluable tool for researchers conducting observational studies about people with CF in the U.S. About 50,000 individuals have been followed in the Registry since its inception in 1986; many of them have been included for over 20 years.
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Ever wonder about an aspect of cystic fibrosis that you would love someone to research? Find out how you can submit a question in our first community-driven research project.
In the third plenary, Dr. Wayne Morgan talked about the connection between cystic fibrosis care and the Patient Registry, and introduced a new way for people with CF, along with their families, to help shape the research conducted using the Registry.
In a complex and rapidly changing health care system, we support policies that promote adequate, affordable health coverage so people living with cystic fibrosis can receive the high-quality, specialized care they need to live longer, healthier lives.
I used the Cystic Fibrosis Foundation Patient Registry Annual Data Report to ask my care teams questions to more effectively manage my CF. You can, too.
The Cystic Fibrosis Foundation believes in empowering our community to advocate for the needs of people with cystic fibrosis. During an election cycle, it's important to ask questions of candidates to understand how their positions would impact the CF community.
The latest trends in the health of people with cystic fibrosis who participate in the Patient Registry have been published in the 2017 Patient Registry Highlights Report.
As Congress debates how to stabilize the health insurance marketplaces, several proposals would directly improve the ability of people with cystic fibrosis to access high quality, specialized care.
Members of the cystic fibrosis community can have an even greater say in research when they vote for the Insight CF questions they most want answered. Readers have until June 21 to vote.
An analysis of cystic fibrosis patient registry data from the United States and Canada found that Canadians were living about 10 years longer than Americans. Two of the study authors discuss the findings and offer some possible reasons for the results.