Open Science and Accelerating Discovery in Rare and Neglected Diseases

Abstract

New medicines for many diseases, in particular neurodegenerative disorders, are not forthcoming, despite patient demands and billions of dollars spent on biomedical research globally. Traditional publishing methods in biomedical sciences are generally slow and disseminate manuscripts, sometimes without the inclusion of primary data, to a privileged audience affiliated to institutions which can afford publication subscription costs. To overcome this barrier to progressive scientific endeavors, many researchers are championing the use of preprints, transparent subject-relevant data repositories, open access journals and open lab notebooks in an effort to more effectively and efficiently communicate their research to a wider audience. In this talk I shall discuss these options and the decisions I have made as an early career researcher, to share my research output on Huntington's disease in real-time through an open lab notebook. Included will be a discussion of the motivations, methods and assessment of open online publishing, including an evaluation of my own open notebook endeavors.