Much of my career has focused on building the systems that help important research questions become meaningful evidence—and, ultimately, better care. I began as a pediatric trauma and emergency nurse and worked to improve pediatric emergency care in various pediatric hospitals. As a senior leader at the University of Utah Data Coordinating Center, our work brings together investigators, statisticians, data scientists, technology teams, clinical research staff, federal agencies, industry partners, and research networks. I have been especially drawn to rare and complex diseases, where no single institution may see enough patients or have enough data to answer the questions that matter. In those settings, collaboration is essential. Data Coordinating Centers help create the infrastructure that allows researchers across institutions to work as one network, using strong study design, high-quality data, shared technology, and common approaches to turn scattered information into knowledge.
We also partner with industry sponsors to support research and promote discovery, creating connections between scientific ideas, technology, and the resources needed to move promising work forward.
That interest in connecting evidence to action has been a thread throughout my career. In the late 1990s and early 2000s, I was involved in advocacy and legislative work in Ohio on behalf of trauma systems, which gave me an early appreciation for how closely research, healthcare systems, public policy, and funding are connected. Rare disease brings all those worlds together in a particularly meaningful way. I have been impressed by the Rare Disease Advisory Council’s ability to bring together patients, families, clinicians, researchers, advocates, and policymakers around issues that can be difficult to address from any one perspective alone. Scientific and technological advances are creating extraordinary opportunities, but progress also depends on strong research networks, trustworthy data, collaboration with industry and patient communities, and sustained government and philanthropic investment. I am glad to contribute to the RDAC because I believe that when those pieces are connected thoughtfully, we can make rare diseases easier to study, generate better evidence, and, most importantly, improve care and expand meaningful options for the rare disease community.
— Sally Jo Zuspan, RN, MSN