Project Summary

CysticLife is an online community for patients with cystic fibrosis and their caregivers. Our members exchange anecdotes regularly about what is working for them, what isn’t, and the side effects they are experiencing. We believe quantifying options for our community members so that they can make more informed decisions is an important next step, and we have wanted to enable our community to conduct and participate in effectiveness research for quite some time. Further, we have envisioned how the community can collaborate on formulating the research question and then work with academic researchers and medical professionals in study design, management, and analysis.

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Project Information

Ronnie Sharpe

Key Dates

12 months


Award Type
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: February 13, 2024