What You Need To Know

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2019 Patient Registry Annual Data Report

The Patient Registry Annual Data Report provides a comprehensive look at the Registry data, with detailed information on topics including diagnosis, CF care guidelines, lung function, microbiology, nutrition, and gastrointestinal and pulmonary therapies and transplantation.

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    2019 Cystic Fibrosis Foundation Patient Registry Snapshot

    This snapshot of the 2019 Patient Registry data shows general trends for people ages 12-44. For information on other ages, including more on the health status of children and adults who receive care at a CF Foundation-accredited care center, download the Patient Registry Annual Data Report.

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    2019 Cystic Fibrosis Foundation Patient Registry Highlights

    Highlights from the 2019 Cystic Fibrosis Foundation Patient Registry data show that people with CF are living longer, healthier lives. This reflects the collective efforts of the CF community to help more people with CF reach key life milestones.

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    Patient Registry Annual Data Report Technical Supplement

    This technical user guide for the CF Foundation's Patient Registry Annual Data Report provides more information to interested readers on: what patients are included in the report; explanation of figures; limitations of Registry data; and issues to consider when interpreting the report. 

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  1. Article

    Patient Registry Data Requests

    The Cystic Fibrosis Foundation Patient Registry contains data since 1986 to track the health of people with CF in the United States.

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  2. Article

    Understanding Changes in Life Expectancy

    People with cystic fibrosis continue to live longer and healthier lives, and the Patient Registry data support this general trend. To understand what this means for our community, however, it is important to understand how these numbers are calculated and what they represent.

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  3. Article

    Care Center Data

    Like the Patient Registry, care center data collected by the Foundation allow staff to compare health outcomes and other aspects of care between centers in the interest of providing the best possible care to all people living with CF.

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  4. Blog Post

    The Patient Registry: Where We’ve Been, Where We’re Going

    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.

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  5. Blog Post

    Survival Trending Upward But What Does This Really Mean?

    Reflecting the continued momentum we're making in the fight against cystic fibrosis, the latest Patient Registry data show steady gains in survival for people with CF. With this good news comes a lot of excitement, along with some questions.

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  6. Blog Post

    Coming to Expect More From My Life

    Growing up, the term “life expectancy” was always with me, affecting my choices and expectations. Over time, I learned to tune it out and live my life my way.

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  7. Article

    Help Shape CF Research

    Recently, the role of the cystic fibrosis community in research has grown to include generating research ideas, helping prioritize research, and consulting with researchers on developing studies.

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