News & Events

Category: Blog

Vivli Executive Director Rebecca Li to Present at PHUSE Data Transparency Winter Meeting

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’s Dr. Ida Sim to lead dkNET webinar entitled “Vivli: A Global Clinical Trials Data Sharing Platform”

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.

View the Recording of Vivli’s 2020 Annual Meeting

“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.

VIEW THE RECORDING

Agenda

Welcome remarks

Vivli Update for 2020, Rebecca Li, Executive Director, Vivli

Panel: The Vivli Project Experience

  • Moderator: Marcia Levenstein, ScD, MBE, Vivli
  • John Frew, MD, Rockefeller University – First Vivli Global Data Sharing Innovator Winner
  • Areti Angeliki Veroniki, MSc, PhD, Senior Research Fellow, University of Ioannina – Member of Vivli Pioneer Award winning team
  • Jane Larkindale, DPhil, Executive Director, Rare Disease Cures Accelerator, Critical Path Institute

Panel Discussion: Cross-Platform Sharing

  • Moderator: Ida Sim, MD, PhD, Vivli, UCSF
  • Vivek Rudrapatna, MD, PhD, UCSF – Vivli Pioneer Award Winner
  • Karla Childers, Senior Director, MSJ, Strategic Projects, Johnson & Johnson
  • Liz Roberts, MSc, Senior Director, Strategic Data Opportunities Policy Lead, UCB

Invited Speakers: Data Sharing During a Time of Public Health Emergency

  • Georgina Humphreys, PhD, Clinical Data Sharing Manager, Wellcome Trust
  • Steve Kern, PhD, Deputy Director, Quantitative Sciences at Bill & Melinda Gates Foundation

Wrap-up and Next steps

  • Rebecca Li, Executive Director, Vivli
  • Michael Stebbins, PhD, Vivli Board Chair, President of Science Advisors

AstraZeneca will share patient-level clinical study data on Vivli

“We are delighted that AstraZeneca is joining as a Vivli member and making it possible for researchers to access the data from their clinical trials,” said Rebecca Li, Vivli Executive Director.Astra Zeneca logo

AstraZeneca is a global, science-led biopharmaceutical company that focuses on the discovery, development and commercialization of prescription medicines, primarily for the treatment of diseases in three therapy areas – Oncology, Cardiovascular, Renal & Metabolism, and Respiratory & Immunology. Based in Cambridge, UK, AstraZeneca operates in over 100 countries and its innovative medicines are used by millions of patients worldwide.

“AstraZeneca is very pleased to be joining Vivli,” said Julie Holtzople at AstraZeneca. “Through Vivli, we will strengthen our external data sharing capabilities with best-in-class research tools and the Wellcome Trust Independent Review Panel (IRP) in service of advancing human health.”

Vivli Article on Data Sharing Published in BMJ Open

Vivli is excited to announce it’s newest publication entitled Timely access to trial data
in the context of a pandemic: the time is now.

The article, published in BMJ Open, highlights how Vivli is addressing the needs of the COVID-19 challenge and demonstrates how the sharing of data collected from each trial participant enables combining of data to drive new scientific insights.

Vivli Executive Director to take part in panel at Northeastern University CLIC Annual Conference

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 team member to present at EMWA 2020 Symposium

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

Synthetic Data Webinar: How to preserve privacy of participants when sharing clinical data

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.

RECORDING

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

RECORDING

Vivli Executive Director to take part in panel at Duke-FDA event on rare diseases and data sharing

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:

  • The importance of shared data to support innovation and quality in the drug development pipeline for rare diseases
  • Approaches and challenges to ensuring data quality, standardization, and interoperability in shared data resources
  • The role of regulatory agencies in strengthening rare disease data collection and shared data resources

Please see the event page for more details and to register for the event.

Taiho joins Vivli, a global data sharing platform

“We are delighted to welcome Taiho Pharma as a member of Vivli and to be able to partner with them to manage requests received for their individual patient-level data from completed clinical trials,” said Rebecca Li, Vivli Executive Director.

Taiho Pharma is an R&D-driven specialty pharma focusing on the three fields of oncology, allergies and immunology, and urology. As a company, they are determined to deliver new drugs that maximize health benefits to patients around the world.

For more information about how Taiho shares data on Vivli, please visit their member page. For additional information about Membership in Vivli, learn more here.