To be sure we are doing everything we can to advance the treatment of rare diseases, Alexion voluntarily shares de-identified data we gather from company-sponsored clinical trials to encourage further research, as appropriate. Only data that cannot be identified back to individual trial participants is shared. In 2019, we formed an internal, cross-functional Transparency and Disclosure Committee to further our voluntary data sharing efforts from clinical studies.

We support clinically and scientifically sound independent research to generate evidence and ultimately contribute to advancing patient care. Through our Externally Sponsored Research (ESR) program, we receive, review and respond to unsolicited proposals from external sponsors requesting funding. Data generated by Alexion-funded ESR studies have been published in peer-reviewed journals, including three publications in 2019. We also encourage academic scientists and researchers to submit proposals for work focused on preclinical translation of scientific discoveries into therapies for rare disorders under Alexion’s Discovery Partnerships program.