CysticLife is already an active 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. We haven't quite known how to take this next step, and PCORI is now making this vision possible.
Our goals for Tier I are to create the infrastructure to allow our community to discuss and prioritize the research areas of greatest importance, strengthen current communication channels for our community members, identify academic researchers and medical professionals with whom to collaborate, and set up an advisory board and governance structure to guide our collaboration and research.
VIDEO: Establishing a Patient-Centered Research Community for Cystic Fibrosis
Ronnie Sharpe talks about his program and the overwhelming support he has received from the community.