Healthy Living

Get Involved: Be a Part of the Cystic Fibrosis Patient Registry

When it comes to the CF Patient Registry, more information is better

The CF Patient Registry remains an important resource among the CF community, continuously contributing to clinical trial research, ‘real world’ research involving the safety and efficiency of newly approved therapies, as well as quality improvement. It would not be made possible without the valuable contributions of numerous individuals with CF and their families who generously agree to share their personal health-related data and the Registry and care teams who gather and enter the data into the system. This is an exciting time for CF research, as innovative therapies and healthcare advances are showing great transformative potential. Thanks to the CF Patient Registry, tracking these important developments means applying knowledge to continuously improve quality of care.

References

https://www.cff.org/Research/Researcher-Resources/Patient-Registry/

https://www.cff.org/Research/Researcher-Resources/Tools-and-Resources/Patient-Registry-Data-Requests/

https://www.cff.org/Research/Researcher-Resources/Patient-Registry/2016-Patient-Registry-Annual-Data-Report.pdf

https://www.cff.org/Get-Involved/Community/Help-Shape-CF-Research/

http://www.gunnaresiason.com/want-cystic-fibrosis-foundation-patient-registry-open-source/

https://www.cff.org/Research/Researcher-Resources/Patient-Registry/2017-Cystic-Fibrosis-Foundation-Patient-Registry-Highlights.pdf

https://www.cff.org/About-Us/CF-Community-Opportunities/Understanding-the-CF-Patient-Registry.pdf