Turn Your Curiosity Into a CF Research Project

Ever wonder about an aspect of cystic fibrosis that you would love someone to research? Find out how you can submit a question in our first community-driven research project.

Nov. 2, 2016 | 2 min read
Emma D’Agostino

As a person with cystic fibrosis, I know that the Cystic Fibrosis Foundation has long been committed to driving research forward. We have the Foundation to thank for many of today's technologies and treatments, from TOBI® and Pulmozyme® to the more recent Kalydeco® and Orkambi®. The Foundation is also involved in basic research to learn more about what the CFTR protein looks like and how it acts, as well as the consequences of a mutated CF gene.

One area of research you may not be aware of involves the CF Patient Registry. This is a database of information from CF patients enrolled in CF Foundation-accredited care centers. Every CF patient can choose whether or not to enroll in the database, and each year data is collected such as age, lung function, hospital stays and regular medications. Click here to see what other types of data are available.

The Registry contains a wealth of information with enough data for many research projects. Although scientists and doctors typically decide which projects are most important, the Foundation and the Patient and Family Research Advisory Committee have decided that it's the community's turn to help decide -- that means you!

As a member of the committee, I have been working with the Foundation to launch this community-driven research initiative. We named it the “Insight CF Project” because we want more insight into this disease. We want you to tell us where to take the research. What questions are most important to you?

In the coming months, we will be collecting questions from the CF community. This is the chance to get your questions answered. People with CF and families are invaluable sources of knowledge -- we know what matters to us and can think about things from a perspective that scientists and doctors simply do not have. After all, we live with this disease day in and day out! 

Visit here to learn more about the Insight CF Project and submit your questions. You also can tweet your questions using #InsightCF.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Emma was diagnosed with cystic fibrosis at birth. She graduated from the University of North Carolina at Chapel Hill with degrees in biology and chemistry (Go Heels!) and is pursuing her doctorate in biochemistry at Emory University in her hometown of Atlanta. In her spare time, she enjoys horseback riding and Irish dance. Emma is a member of the Patient and Family Research Advisory Council at the Cystic Fibrosis Foundation. You can contact her at ehdagostino@gmail.com.

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