CRDSA’s publicly available deliverables and resources can be found in this section of our site.
Data Protection Work Group
Whitepaper: A Review of BioPharma Sponsor Data Sharing Policies and Protection Methodologies
Date: September 12, 2022
This white paper examines clinical trial data contribution policies and the data protection methodologies applied to protect patient privacy. Information published by 29 biopharma sponsors was collected across three data-sharing platforms, collated by sponsor size. Results showed that large sponsor contribution policies can provide helpful benchmarks for medium and smaller sponsors. However, understanding the data protection methodologies applied by data contributors required the development of an interpretation rubric. This lack of clarity in the critical data transformation area can present a significant barrier for researchers and hinder their understanding of which studies will be useful in their research. Findings of the paper include highlighting an opportunity for sponsors to both aid researchers and reduce unnecessary data preparation work by sharing information with more consistency and clarity.
Webinar: Review of Data Sharing Policies and Protection Methodologies
Date: June 29, 2022
At the PHUSE Data Transparency Summer Event, Aaron Mann and Luk Arbuckle (Privacy Analytics) previewed a data protection assessment methodology, highlighted some of the challenges faced by researchers when relying on publicly available sponsor information, and discussed the importance of developing reliable benchmarks that can help guide sponsor policy development.
Podcast: Unlocking the True Potential of Clinical Research Data
Date: September 23, 2022
In Teckro’s podcast episode “Unlocking the True Potential of Clinical Research Data,” Aaron Mann discusses the importance of unleashing the power of clinical research data. Aaron explains why he’s optimistic about the potential of data sharing among sponsors to revolutionize trial design and improve patient recruitment – and why he believes patients really want their data to be shared.
Podcast: Mind Your Data: The First Rule of Predictive Analytics in Clinical Research
Date: June 17, 2022
In this episode of the IEEE Standard Association’s “Re-Think Health” Podcast Series, Aaron Mann and Maria Polombini discuss how open data sharing is paving the way to access more quality, real-world and inclusive data to enable predictivity analytics to be more accurate, resourceful, and utilitarian in the world of clinical research.