What You Need To Know

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2016 Patient Registry Reports

Highlights from the 2016 Cystic Fibrosis Foundation Patient Registry data include improvements in life expectancy and other aspects of life with cystic fibrosis, and reflect the collective efforts of the CF community to help more people with CF reach key life milestones.

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  1. 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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  2. Article

    Patient Registry Data Requests

    The Cystic Fibrosis Foundation Patient Registry has been collecting data for more than 40 years to track the health of people with CF in the United States.

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  3. Download

    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. Download

    2015 Patient Registry Annual Data Report

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

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  2. Download

    Highlights of the 2014 Patient Registry Data

    This report highlights the steady progress we are making and also reflects the dedicated teamwork of many, including CF care centers, researchers and, above all, those living with CF and their families.

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  3. 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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  4. 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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  5. Article

    Contribute to Our Research

    The Insight CF Registry Research Project gathers questions from the cystic fibrosis community and uses data in the Cystic Fibrosis Foundation Patient Registry to answer them.

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Find Events Near You

With more than 70 chapters and offices across the country, it’s easy to find and join a local Cystic Fibrosis Foundation chapter near you.

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