What You Need To Know

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CF Patient Registry Reports

Every year, the CF Patient Registry gathers data from more than 28,000 people with CF. This data is compiled anonymously and published in two Patient Registry data reports with the goal of improving health care for all people with cystic fibrosis.

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  1. Article

    Care Center Data

    Like the Patient Registry, care center data collected by the Foundation allows 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 provides patient registry data collected over 40 years to qualified researchers to use in their observational studies.

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    2014 CF Foundation Patient Registry Annual Data Report to the Center Directors

    The Patient Registry Annual Data Report to the Center Directors 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, gastrointestinal and pulmonary therapies and transplantation.

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    2013 CF Foundation Patient Registry Annual Data Report

    For those interested in learning about CF, the Patient Registry Annual Data Report provides a summary of key data findings, including demographic information and health outcomes of individuals who agreed to share their data in the reporting year.

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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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