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Data Transparency Winter Event 2025 |
Active since 2014, PHUSE’s Data Transparency Working Group has provided subject matter expertise for the review of draft deliverables and guidance documents from regulatory bodies (such as the EMA and Health Canada), as well as other industry organisations (such as TransCelerate) and academia. Since their inception in 2020, the free-to-attend Data Transparency Events have gone from strength to strength. These virtual events have created an unrestricted space where questions can be asked and challenges addressed. Individuals passionate about the area can come together to share vital knowledge, develop new ideas and spark innovation through presentations, panel discussions and Q&A sessions alongside experts in the data-sharing field. The PHUSE Data Transparency Winter Event took place on 4–6 February 2025. Data Transparency Events offer you the chance to gain knowledge and experience from a wide data transparency community, allowing you to come together with experts from a variety of companies and backgrounds. During this virtual event, presentations were delivered across the three days in bitesize chunks from 15:00-17:30 (BST) / 10:00-12:30 (EDT) / 16:00-18:30 (CEST) There was also a panel discussion and Q&A session focused on the day's themes. Links to the event presentations and daily recordings can be found here. |
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Announcement - Emerging Trends and Technologies Working Group Has Changed its Name!
There’s been an exciting change in Working Groups recently…
The Emerging Trends and Technologies Working Group has officially evolved into the Emerging Trends and Innovation Working Group!
Why the change? Working Group Lead Mike Hamidi shares what brought about this change of name and scope:
"The name change from Emerging Trends & Technologies to Emerging Trends & Innovation reflects a broader focus beyond technological enablement. This shift encompasses ongoing developments in areas such as AI/ML, digital health technologies and healthcare standards and aims to provide deeper insights into these and other evolving topics. This adjustment will preserve the emphasis on emerging trends while enhancing our commitment to delivering valuable industry insights and innovations.”
We are equally excited to welcome Mark Bynens, the new Working Group Lead. He joins Mike Hamidi and Stuart Malcolm, expanding the team’s expertise and capacity.
Mark Bynens brings a wealth of experience as Director and Scientific Computing Operations (SCO) Head within Statistics & Decision Sciences (SDS), Global Development at Johnson & Johnson. Mark leads initiatives in change management, project management, education, high-performance computing, and statistical research.
Learn more about the Working Group Leads and their efforts here.
Would you like to get involved in Working Groups? Check out the new Project Volunteer Board to view all opportunities.
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A new Data Transparency deliverable is out for public review! The Rare Disease/Small Population Data Sharing project has produced a new White Paper - “Rare Disease Clinical Data Sharing” and are seeking your feedback. The purpose of this White Paper is to review potential barriers to the sharing of rare disease data such as risk of re-identification and invasion of privacy (balanced against maintaining data utility) and understand if, and how, these barriers apply to controlled access data sharing under specific contextual assumptions. The development of strategies to enable rare disease data to be shared effectively and be reused is needed to advance research and clinical trial design where there is significant unmet need. Email workinggroups@phuse.global by 7April to contribute your feedback! |
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