News & Events

Vivli Annual Meeting demonstrates data sharing progress

This year’s Vivli Annual Meeting was the most well-attended to date—more than 80 people attended in person and more than 150 people attended online to discuss the impact of data sharing via the Vivli platform. Watch the meeting on YouTube.

Over seven sessions, data contributors and researchers offered their perspectives on how clinical data sharing is advancing progress in cancer diagnosis and treatment, the global response to anti-microbial resistance (AMR), and more.

Sarah Greer and Adrian Peryer created a visual representation of the meeting. They produced 9 illustrated boards that highlighted the insights from each panel. During interactive breaks between panels, participants were also invited to share what conversations had captured their interest by marking the boards with red dots.

 

The highlights of the afternoon were two sessions on sharing imaging data. Dan Boisvert (Biogen) discussed how a Vivli partnership with Boehringer Ingelheim, Biogen, Pfizer, and Sanofi is taking on the challenges of anonymizing images, such as MRI and x-ray imaging, linking that data with tabular data, and making it available through the platform.

After that, Tim Kinkead (Preva Group) shared how the Gates Foundation is supporting the development of an AI-enabled low-cost ultrasound device, so that pregnant women in low-resource settings can have improved care for the mother and baby. Sharing ultrasound imaging data has been integral to training the device as part of the development process. This will ensure that nearly anyone can use the device to generate an accurate ultrasound.

Vivli will also be sharing additional footage from a fireside chat with the Vivli AMR Data Challenge panelists and insights from our Vivli Ambassadors. Stay tuned for those updates to learn more about how insights from data sharing are shaping clinical practice and changing global responses to AMR.

Thank you to everyone who joined virtually and in person for the 2025 Vivli Annual Meeting.

Vivli version 3.8 of the platform has been released

Version 3.8 of the Vivli platform has been released and is available to users. Highlights of the release for researchers include:

  • Dedicated publication workflow: There is now a dedicated workflow for researchers to submit public disclosures for review.
  • Enquiries: Researchers can now submit questions about studies via the platform. They can also ask whether a study is available from a Vivli member if it doesn’t appear in the Vivli search results.
  • Updated research environment display: The display now provides more detailed information to researchers about their use of the research environment.
  • Downloadable search results: Researchers can download search results as a .csv file.

All Vivli resources and how to guides have also been updated with the latest release.

“By adding a dedicated workflow for public disclosures, we hope to make it easier for researchers to share outputs from their analyses,” said Julie Wood, Vivli COO. “These enhancements are all based upon feedback from our users. Platform developments are driven by the feedback we receive, so we encourage researchers to reach out to us if they have questions.”

To provide feedback to the Vivli team, please email support@vivli.org. In addition, Vivli regularly conducts user interviews. Researchers can complete this form to sign up to take part in user interviews.

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    2025 Vivli Annual Meeting examines “Data in Action: From Contribution to Impact”

    The 2025 Vivli Annual Meeting was held at Loeb House at Harvard University in Cambridge, MA, and virtually on Thursday, October 23.

    During this meeting, we:

    • Explored how researchers, data contributors, and funders are transforming clinical trial data into real-world health impact.
    • Heard how platforms like Vivli are enabling responsible data sharing and fostering a cycle of data re-use.
    • Learned about success stories of groundbreaking data challenges and how they are shaping new developments in various fields of medicine.

    Watch the meeting

    Agenda

    Welcome and Introductions Rebecca Li, Vivli

    Researcher and Data Contributor Panel – From Contribution to Impact in Oncology

    Moderator: Murray Stewart, Vivli

    Paula Boyles, Pfizer

    Jennifer O’Callaghan, Roche

    Ben Rotz, Lilly

    Jonas Saal, University Hospital Bonn

    Youssef Zeidan, Baptist Health South Florida

    Data ChallengeLessons Learned from the Helmsley Type 1 Diabetes Challenge

    Moderator: Deniz Dalton, The Leona M. and Harry B. Helmsley Charitable Trust

    Robin Gal, Jaeb Center for Health Research

    Dana Lewis, OpenAPS

    Data ChallengeLessons Learned from AMR Data Challenges

    Moderator: Rebecca Li, Vivli

    Harry Akligoh, Northeastern University and Duplex Bioscience

    Kasim Allel Henriquez, University of Oxford

    Katherine Perez, Pfizer

    Amanda Skarlupka, Vivli

    Researcher and Data Contributor Panel – From Contribution to Impact in Clinical Trial Applicability to Routine Care

    Moderator: Ida Sim, University of California, San Francisco, and Vivli

    Jessica Lim, GSK

    David McAllister, University of Glasgow

    Ben Rotz, Lilly

    Cris Woolston, Sanofi

    DOJ Countries of Concern – Final Ruling and Practical Implementation for Data Sharing

    David Peloquin, Ropes & Gray

    Julie Wood, Vivli

    Unlocking Imaging Data Sharing – A Collaboration on Imaging Anonymization

     

    Dan Boisvert, Biogen

     

    Gates Foundation Initiative to Improve Maternal and Infant Health by Sharing Ultrasound Image Data Tim Kinkead, Preva Group
    A Way Forward

    Rebecca Li, Vivli

    Mike Stebbins, Science Advisors and Vivli

     

    Vivli CEO Rebecca Li to participate in panel discussion about data sharing under new Department of Justice rule

    On September 17, Vivli CEO Rebecca Li, PhD, will speak at the PHUSE Data Transparency Autumn Event. This free, virtual event offers an opportunity for attendees to collaborate on ideas related to data transparency and data sharing. Data managers, biostatisticians, and other professionals interested in data sharing are encouraged to attend.

    Dr. Li’s presentation, “Navigating Data Sharing Compliance Under the US DOJ Final Rule on Transfers of Sensitive Personal Data to Countries of Concern – Operational Impacts,” will be from 10:30 a.m. to 12:30 p.m. ET and will focus on privacy-preserving techniques, data anonymization, and governance frameworks. The panel presentation will respond to recent technological and geopolitical developments, including a rule recently issued by the U.S. Department of Justice. Register to attend this free, virtual event.

    Vivli Researcher Spotlight: Examining survivor function data across multiple trials for kinetics of stroke recurrence

    James Brorson is a professor of neurology at the University of Chicago, with a research focus on vascular neurology. He has more than 25 years of patient care experience, as well as laboratory and clinical research. He has served as a principal investigator for several clinical trials in secondary stroke prevention, and currently serves as medical director of the University of Chicago Comprehensive Stroke Center, which cares for more than 400 stroke patients annually.  

    Dr. Brorson’s team submitted a research proposal to access Vivli to conduct analysis relevant to their topic, “Examination of survivor functions from SOCRATES and THALES trials for kinetics of stroke recurrence.” The team’s completed research has recently been presented to the research community in publications including Neurology and Stroke

    Stroke is a common and often devastating condition in which blockage of blood flow to a part of the brain leads to its destruction, with corresponding loss of function, producing a variety of symptoms. Stroke is a leading cause of death and long-term disability globally. In the United States, some 800,000 persons suffer strokes each year, and more than 100,000 die.

    A person who suffers a first stroke classified as mild is at increased risk of a second, often more severe stroke. The risk of recurrence is highest in the immediate aftermath of the first stroke, and prevention efforts frequently concentrate in the 12-24 hour period following the first incident. The rate of recurrence declines over time, and researchers have theorized that examination of the time course for the timing and rates of stroke recurrence may provide insight which may help with devising better ways to prevent recurrent strokes. 

    Dr. James Brorson and a team of colleagues set out to harmonize, merge, and assess data gathered from participants in three large trials in the aftermath of a first stroke event. Their aim was to determine whether treatment decisions could be made more precisely based upon analysis of timing and rates of stroke recurrence. They accessed data from more than 25,000 participants in order to provide sufficient statistical power to detect modifiers of early and late kinetics of stroke recurrence.

    To carry out their analysis, the team developed a two-state kinetic model of stroke recurrence. This model proposes an initial vulnerable state with a higher rate of stroke recurrence, which rapidly transitions to a stabilized state with a lower rate of recurrence. They further theorized that this model would fit the survival data for each of these recent trials of acute secondary prevention better than would a model assuming only a single clinical state after the initial minor stroke.

    The team’s findings established that recurrence of stroke is well-described by a two-state kinetic model postulating vulnerable and stabilized states, with similar kinetic parameters across the three trials. Their analysis also indicates that enhanced antiplatelet regimens only affected the recurrence rates during a brief period in the vulnerable state. This suggests that two distinct states follow acute cerebral ischemic events, and that these states are subject to differential impact of immediate or delayed therapies. 

    These findings have been published in the academic journals Neurology and Stroke. The authors are also working on a second phase of this project to harmonize and curate the data from the first phase into a single large dataset. When complete, they plan to re-share this dataset on the Vivli data repository to support further research in this area, providing additional opportunities for analysis and identification of new methods to prevent stroke recurrence.

     

    Read more about Dr. Brorson’s research:

    Examination of survivor functions from SOCRATES and THALES trials for kinetics of stroke recurrence (Vivli Research Request 6550)

    Vulnerable and Stabilized States After Cerebral Ischemic Events: Implications of Kinetic Modeling in the SOCRATES, POINT, and THALES Trials (Neurology

    Abstract WMP61: Vulnerable And Stabilized States After Cerebral Ischemic Events: Implications Of Kinetic Modeling In The POINT, SOCRATES, And THALES Trials (Stroke)

    Interested in finding out more about how access to Vivli’s data repository can help advance your research? Find out more about how to search and request data.

     

    Meet the 2025 Vivli Ambassadors

    Vivli is proud to announce the selection of our 2025 Vivli Ambassadors. This diverse group of researchers has been chosen for their commitment to data transparency and their leadership in advancing clinical research around the world.

    “We are delighted to have the interest and involvement by these researchers to advocate for data sharing and how sharing data can lead to novel insights and add to the scientific literature,” said Rebecca Li, Vivli CEO. “We look forward to supporting these researchers as they discuss their scientific findings.”

    The Vivli Ambassador program aims to amplify the impact of data sharing by supporting researchers who are using the Vivli platform in innovative and meaningful ways. This group of dedicated researchers will talk about their research at conferences and through other means of dissemination. They will participate in user interviews, provide feedback to help improve the Vivli user experience, and contribute to conversations around responsible data reuse.

    We congratulate the following researchers on their selection:

    • Dr. Diego Chowell, Icahn School of Medicine at Mount Sinai
    • Dr. Ashley Hopkins, Flinders University
    • Dr. David McAllister, University of Glasgow
    • Dr. Jonas Saal, University Hospital Bonn
    • Dr. Marco Valgimigli, Cardiocentro Ticino
    • Dr. Youssef Zeidan, Baptist Health South Florida

    These Ambassadors represent a range of disciplines and geographic regions, and we look forward to sharing more about their work and experiences in the coming months.

    Stay tuned as we highlight their stories and insights through our upcoming events and publications.

    Alfasigma joins Vivli as a member to share data

    “We are delighted to have Alfasigma join as a member of Vivli,” said Rebecca Li, Vivli CEO. “We look forward to working with the team at Alfasigma to share data to meet their data sharing commitments.”

    For more information about the conditions for accessing Alfasigma data, please visit their member page. Learn more about membership in Vivli.

     

    Celebrate Clinical Trials Day by sharing your data and get CRedIT!

    Clinical Trials Day is celebrated on May 20, commemorating the day in 1747 on which James Lind is believed to have begun the first known controlled trial. Clinical trials remain the cornerstone of effective scientific and health research, and the clinical research data gathered provides valuable resources for further research, advancing science, and improving human health.

    Sharing data is valuable not only to the research community, but also benefits the researchers who have conducted the trials and gathered the data. The Vivli platform enables researcher teams who submit and store their clinical research data to receive CRedIT on their ORCID profiles. Subsequent secondary analysis publications that are derived from the initial data are cited and tracked in Vivli.

    Learn more about how data sharing with Vivli can contribute to your CRedIT in this new informational video.

    Vivli co-founder to be honored at Research!America Advocacy Awards


    Vivli is delighted to congratulate our co-founder and Board member Dr. Barbara Bierer on being chosen to receive the Herbert Pardes Family Award for National Leadership in Advocacy for Research.

    The Research!America Advocacy Awards honor “individuals and organizations whose leadership efforts have advanced our nation’s commitment to medical, health, and scientific research.” The award will be presented at an event on March 12 at the National Academy of Sciences in Washington, D.C.

    Dr. Bierer is the faculty co-chair of the Multi-Regional Clinical Trials Center of Harvard and Brigham and Women’s Hospital (MRCT Center); a Professor of Medicine, Harvard Medical School and Brigham and Women’s Hospital, Boston; and a hematologist/oncologist. Her clinical, research, and non-profit work throughout her career demonstrate her commitment to public engagement, research integrity, and innovation.

    “We are thrilled to hear of Dr. Barbara Bierer’s award,” said Rebecca Li, Vivli CEO. “Her work as both a clinician and an advocate for improving access to medical data have had an enormous impact on health research.”

    Read more about the Research!America Advocacy Awards

     

    Vivli launches Ambassador Program

    Vivli is delighted to share that we have launched the Ambassador Program and selected our inaugural cohort of Ambassadors. The program was created to raise awareness of the importance of data sharing and reuse, as well as to promote the research opportunities available through the Vivli data repository.

    Selected Ambassadors were eligible for financial support to attend conferences aligned with their research focus. A total of five travel grants of $2,500 were awarded. In addition to presenting their work, Ambassadors will participate in user interviews and testing twice a year to help guide the continued development of the Vivli platform.

    Researchers who had successfully completed a project using data from the Vivli repository were invited to apply. Eligible researchers received a direct email invitation to submit a brief proposal outlining how they would promote research using the Vivli platform.

    Read the full announcement here.