The YODA Project recommends the following articles for those interested in learning more about the data sharing field. Many of these articles aided in the development of the YODA Project policies and procedures. This is not intended to be a comprehensive list, and additional resources will be added over time.
NIH Data Sharing Resources
National Academy of Medicine
|Greene SM, Ahmed M, Chua PS, and Grossmann C, Editors. 2021.
Sharing Health Data: The Why, the Will, and the Way Forward. NAM Special Publication. Washington, DC: National Academy of Medicine.
|National Academies of Sciences, Engineering, and Medicine. Reflections on Sharing Clinical Trial Data: Challenges and a Way Forward: Proceedings of a Workshop. Washington, DC: The National Academies Press, 2020.|
|Institute of Medicine. Sharing Clinical Trial Data: Maximizing Benefits, Minimizing Risk. Washington, DC, The National Academies Press, 2015.|
|Institute of Medicine. Discussion Framework for Clinical Trial Data Sharing: Guiding Principles, Elements, and Activities. Washington, DC, The National Academies Press, 2014.|
|Institute of Medicine. Vaccine Safety Research, Data Access, and Public Trust. Washington, DC, The National Academies Press, 2005.|
Data Sharing Policies and Progress
Approaches to Data Sharing
Importance of Transparency
|Mello MM, Lieou V, Goodman SN. Clinical Trial Participants’ Views of the Risks and Benefits of Data Sharing. NEJM. 2018; 378:2202-2211.|
|Lomas A. I’m a Patient: Show Me the Trial Data. BMJ. 2013;346:f2336.|