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.
VIDEO (below): Establishing a Patient-Centered Research Community for Cystic Fibrosis
Ronnie Sharpe, Pipeline to Proposal awardee and founder of CysticLife, talks about his proposal and the overwhelming support he has received from the community.