The effectiveness of any healthcare-related research governance system is dependent on its ability to identify, challenge and change practices that compromise its ability to deliver timely, proportionate review. We present a case study outlining our experience of obtaining research ethics committee (REC) and Public Benefit and Privacy Panel (PBPP) for Health and Social Care approval to conduct a study which aimed to collect data on diagnostic and care pathways and determine the national prevalence of two rare diseases in Scotland. We discuss the threats posed to low-risk observational epidemiological research by disproportionate governance practices and propose practical solutions. In the context of increasing investment, the ever-increasing barriers to doing high-quality, low-risk epidemiological research using patient-identifiable information is concerning. Information governance committees, guided by clinical researchers, must step up as leaders in this area, making use of flexibilities and opportunities within the law.
Keywords: corticobasal degeneration; epidemiology; progressive supranuclear palsy; regulatory approval; research governance.