CysticLife is an online community for patients with cystic fibrosis (CF) and their caregivers. Our members exchange anecdotes regularly about what is working for them, what isn’t, and the side effects they are experiencing. During Tiers I and II, we built a long list of research questions submitted by a wide range and diverse group of stakeholders in the CF community. In Tier III, we will expand on and decide the most relevant outcomes measures, compared interventions, and populations targeted for the questions scored the highest by our members and the CysticLife Research Advisory Board (CRAB). We will also identify any new research that has been published in our topic area since creating a comparative effectiveness research (CER) question grid to ensure that we will be adding new and interesting research to the scientific and patient community. Through these different measures, the CRAB will be able to critically assess each question’s ability to be studied by our partnership and present the question most likely to be supported by PCORI funding.
Our co-leader and research partners are seasoned scientists with decades of experience and highly qualified to draft a competitive LOI and research proposal. We will achieve this goal because we have made an investment in forming strong relationships and building trust with experienced scientists, clinicians, researchers, patients, and other stakeholders who believe in our mission and share our passion for the research questions we can address through our combined efforts.