Get Involved: Be a Part of the Cystic Fibrosis Patient Registry
Patients have a unique role in shaping future CF research. Here's how you can help:
No healthcare professional or researcher can fully comprehend what it is like to live with CF on a daily basis. This is where you come in. You have the opportunity to shape CF research by providing your insights about the genetic disorder, including the physical and emotional aspects that researchers may often fail to see.
Now, individuals with CF have begun to contribute their own expertise to research on CF, helping researchers to focus their efforts and the CF community to raise their voices. What started as a small project has now expanded to countless opportunities for individuals with CF and their families to work together on research that will eventually affect them directly.
There are several ways in which you can get involved in CF research, including:
- Becoming a member of Community Voice and joining Research Voice
- Signing up for CF Foundation emails and staying up to date on Insight CF research opportunities
- Participating in clinical trials and learning about the outcomes of the studies
