About
Patient partner Catherine Anderson is a practicing market researcher with more than 20 years' experience in the research field as well as an iSGS patient. As a researcher hungry to fully understand her diagnosed condition, she was disappointed with how little she initially found. In 2009, as social media was beginning to take off, She founded a support group on the social networking site, Facebook; 'Living with idiopathic Subglottic Stenosis'. Gradually membership of the group grew –today there are in excess of 2800 members worldwide. Catherine's role as co-investigator includes refining the study’s research questions and outcomes, as well as aiding in dissemination efforts through her leadership position in the iSGS disease support group. With her involvement in the planing aspects of the study, her patient perspective is deeply integrated into trial design. Catherine has performed groundbreaking work to engage the iSGS community where questions about the "best" treatment are pervasive. She has used the Facebook group as a platform to help understand patient needs, and the patient perspective on therapy and subsequent side effects. In her surveys conducted between 2011 and 2018 she identified large gaps in what patients and providers understand about the disease.
Joined
June 2018
