The MRCT Center and Vivli will host a virtual roundtable meeting for our stakeholders and members based in Japan. Meeting topics will include:
• Diversity in Clinical Trials,
• Approaches to Data Sharing, and
• Synthetic Data – Patient Privacy and Other Use Cases
Following presentations, Vivli and MRCT Center teams will be available for informal discussion.
The event will take place March 3, 2021 from 10:00 am to 12:30 pm Japan Standard Time (March 2, 2021 from 8:00-10:30 pm EST).
Vivli Executive Director, Rebecca Li, will join Critical Path Institute’s Jane Larkindale and Debra Miller from CureDuchenne for a session on Data Sharing of Rare Disease Data – Challenges and Rewards at the PHUSE Data Transparency Winter Meeting.
This live presentation can be viewed on Tuesday 19th January 2021 between 15:00–17:30 GMT (10:00 am – 12:30 pm EST). Attendees will have the opportunity to listen to three live presentations, and then participate in a joint panel discussion/Q&A session based on the content from the day.
Vivli Co-Founder Dr. Ida Sim will lead a dkNET webinar entitled “Vivli: A Global Clinical Trials Data Sharing Platform”. dkNET is a search portal that helps researchers find research resources relevant to their research and keep up to date on new tools, services and mandates to support robust and reproducible science. In this webinar, Dr. Sim will explore questions such as why organizations should share completed clinical trial data, how Vivli can help organizations share their clinical trial data, and what the process is to request data from completed studies.
“Vivli Global Researchers and Key Stakeholders – Creating Impact”
On November 10th, we gathered for a lively discussion as part of our 2020 Annual Meeting. The meeting created a dialogue between researchers and data contributors about data sharing and what can be done to further increase scientific knowledge in future.
Welcome remarks
Vivli Update for 2020, Rebecca Li, Executive Director, Vivli
Panel: The Vivli Project Experience
Panel Discussion: Cross-Platform Sharing
Invited Speakers: Data Sharing During a Time of Public Health Emergency
Wrap-up and Next steps
Vivli Executive Director, Rebecca Li, will take part in a panel discussion next week as part of Northeastern University’s Center for Law, Innovation and Creativity Annual Conference.
The virtual conference, entitled This is What Democracy Looks Like – Exploring the Future of Governance Through Intellectual Property and Technology Regulation, will be held on Friday, October 16th from 9:00 am to 4:00 pm ET, and will feature discussions concerning transparency and innovation in health and medicine, election law, free speech and data privacy. Rebecca will participate in the first panel discussion on Privacy Incoherence in Medicines: The Confluence of Corporate Trade Secret, Government Non-Transparency, and AI Mediated Erosion of Patient Privacy.
Vivli’s Director of Strategy and Operations, Julie Wood, will be presenting at the 2020 European Medical Writers Association 2020 Virtual Symposium on 6 November 2020. The event’s theme is Research Integrity & The Medical Communicator: What We Do When Know One is Watching.
Wood’s talk is entitled Responsible Data-Sharing to Improve Research Integrity. View the full agenda
September 3 at 11AM ET
This 60-minute webinar will explore the emergence of synthetic data, a privacy preservation approach to protect individual patient data. Top experts will explain what synthetic data is, when and how to deploy this approach and share case studies about the successful utilization of using synthetic data and future applications of synthetic data.
Topics include:
• Highlight issues faced by data contributors wishing to share data from rare diseases concerned about privacy issues
• Putting synthetic data in context with other privacy preservation approaches
• Case studies of successful use of synthetic data and how it applies to clinical research
Webinar attendees will have the opportunity to ask questions of the panelists.
Moderators:
Ida Sim and Marcia Levenstein, Vivli
Presenters:
Patrick Cullinan, Bluebird Bio
Khaled El Emam, Replica Analytics
Michael Lesh, Syntegra
Vivli Executive Director, Rebecca Li, will take part in a panel discussion as part of Data Sharing to Accelerate Therapeutic Development for Rare Diseases hosted by Duke and the FDA. Her session will focus on platform analytics tools to support data sharing and drug development for rare diseases.
The Duke-Margolis Center for Health Policy, through a cooperative agreement with the U.S. Food & Drug Administration, is convening a two-day public meeting on August 18th and 19th, to discuss the importance of data sharing for accelerated therapeutic development in rare disease as well as considerations for sustaining and leveraging a robust data sharing infrastructure to support innovative rare disease trial design. The meeting will explore several topics including:
Please see the event page for more details and to register for the event.
Vivli’s co-founder Ida Sim to speak at a webinar hosted by the National Library of Medicine (NLM) at the National Institutes of Health (NIH) for researchers to learn how to share, discover, and cite COVID-19 data and code in generalist repositories. Dr. Sim will speak to Vivli’s involvement in supporting discoverability and reusability of COVID-19 data on Friday, April 24th at 2:10 pm ET.
View Dr. Sim’s slides from the presentation.
Join Vivli and Privacy Analytics for a discussion of how both organizations help data contributors to share their data securely and protect patient’s privacy. The webinar will include discussions about the different approaches to anonymization and the value of a risk-based, quantitative anonymization approach. Learn more about how together we are building research communities to advance scientific research and creating trustworthiness through transparency. The webinar will be held on April 2nd at 10 am ET.
Our key topics include:
• Overview of the regulatory landscape
• Importance of data-sharing and secondary-use of data
• The fundamentals of anonymization
Presenters:
Rebecca Li, Vivli
Niamh McGuinness, Privacy Analytics