Sandy Sufian, PhD, MPH, has worked as a core member/co-investigator on a PCORI Pipeline-to-Proposal project, for the past two years. The project focuses on identifying and addressing the sexual and reproductive health needs across the life of women with Cystic Fibrosis (CF). In Sufian’s dual role as a CF patient and a researcher, it was her own experience and frustrations with CF-related reproductive care and the lack of research that provided the genesis for the project application. From the project, her and her colleague, Emily Godfrey, founded a collaborative called the Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC). Using PCOR principles, the collaborative engages patients to help identify research priorities of women with CF on various sexual and reproductive health issues. The collaborative also solicits recommendations from patients about improving aspects of the provision of care. As an Associate Professor at University of Illinois-Chicago College of Medicine, Sufian will continue her CFReSHC work and ultimately intends to make it the centerpiece of her research agenda. Being an Ambassador strengthens her ability to achieve her professional goals and contribute in significant ways to rare disease communities and research. Sufian also serves on the PCORI Patient Engagement Advisory Panel and is a co-investigator on three other research studies relating to CF.
Pipeline to Proposal: Advancing reproductive health and wellness between patients with Cystic Fibrosis, their caregivers, healthcare providers and researchers – Co-Investigator
Engagement Award: Building Research Partnerships to Improve Sexual and Reproductive Health for Women with Cystic Fibrosis – Governance Board Member/Co-Investigator
Advisory Panel on Patient Engagement
Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC) – Co-Lead
University of Illinois-Chicago, College of Medicine – Faculty