Clinical Study and Real-World Evidence Data Transparency Policy Everything we do at UCB starts with one question: how can we improve the lives of people living with severe diseases? One way we do this is by sharing information about our clinical and observational research, including the results. Sharing this type of information can help patients and their caregivers make better informed decisions about their healthcare and treatment options. It is also a way to acknowledge the people who participated in our clinical studies. UCB follows or exceeds the standards set by pharmaceutical industry associations in the European Union and United States including: Principles for Responsible Clinical Trial Data Sharing from the European Federation of Pharmaceutical Industries and Associations & Pharmaceutical Research and Manufacturers of America (EFPIA/PhRMA) and International Federation of Pharmaceutical Manufacturers & Associations (IFPMA) Good Publication Practice Recommendations of the International Committee of Medical Journal Editors Recommendations from the Joint International Society Pharmacoeconomics and Outcomes Research (ISPOR)-International Society for Pharmacoepidemiology (ISPE) Special Task Force on Real-World Evidence in Health Care Decision Making You can follow the links below to find out more about our policies on sharing observational and clinical study information: Study registration and research results Registration and results reported on public websites called clinical study registries. Peer-reviewed journal articles Publication of articles in scientific and medical journals. These articles share the results of our research – in context – that have been reviewed by independent scientists before publication. Study Reports and Synopses Reports and summaries of research results in scientific and medical language. Plain language Summaries of research results These summaries share the main results of clinical and observational research in easy-to-understand words and graphics to help participants and the public understand what we have learned in our research. Access to patient-level clinical study data UCB provides qualified researchers with the detailed data from completed studies. Study participants’ personal information is protected before these data are shared. Responsibly sharing data from our studies allows other researchers to conduct additional research that could help patients.
