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Vivli Researcher Spotlight: Improving mentorship and clinical practice in breast cancer care with Vivli

Youssef Zeidan is a radiation oncologist at the Lynn Cancer Center, part of Baptist Health South Florida. Dr. Zeidan was previously an assistant professor of radiation oncology at the American University of Beirut, where he mentored several students who are now working at cancer centers and universities throughout the United States. Dr. Zeidan and his team have authored more than 50 publications related to radiation oncology. He was also part of the committee that developed the 2025 American Society for Radiation Oncology, American Society of Clinical Oncology, and Society of Surgical Oncology guideline on postmastectomy radiation therapy. His contributions to that committee drew upon research conducted with the Vivli platform.

In the extended interview below, Dr. Zeidan discusses how his work with Vivli has influenced both his medical practice and mentorship. Responses have been edited for length and clarity.

Watch the video: Dr. Zeidan discusses how his research with Vivli informs his clinical practice

How did you first learn about Vivli?  

I learned about Vivli first from a colleague at a medical conference that I was attending, and it’s been a great journey since then. I’m very thankful for the circumstances. We were at a conference for breast cancer, and they shared with me that I could access clinical trial data through Vivli.

What made you interested in using the platform?  

Once I started looking at Vivli, I found it very helpful in asking clinically relevant questions, especially in my domain, which is radiation therapy for breast cancer. Over the past seven years, Vivli has been a great partner in answering key questions in radiation therapy that are relevant to breast cancer patients. We run into situations in treating breast cancer where there are a lot of grey zones, and we don’t have available clinical trial data. Vivli has been a great platform for doing secondary analysis and trying to answer those questions.

Why is Vivli so important for your area of research?

Radiation therapy uses high energy x-rays to treat cancer patients, in my case breast cancer. Vivli has this unique ability to capture data about radiation therapy even though the trials did not specifically ask about the impact of radiation therapy in breast cancer.

For us, it’s a tremendous resource to repurpose and re-analyze those trials for secondary objectives to see the impact of radiation therapy, rather than the drug that the trial is trying to evaluate. In order to do that, we have to do it in a very balanced manner, in a very efficient manner. It takes a tremendous effort from the statisticians, the physicians, the people collecting data, and our partners at Vivli to bring it to an outcome. 

How have you used Vivli as a tool for mentorship?  

Many of my research team members started as medical students working with me as their advisor. Some of them have now taken faculty positions in very important cancer centers. It’s very rewarding to see the impact of that work, not only in terms of scientific value, but also in terms of the humanitarian value and what happens to the careers of the individuals who are conducting the research.

As a faculty member, I always had students that knocked on my door; they love to be involved in research, love to have projects. The interest is genuine—so to have these students with that drive to answer clinical questions that are out there is huge for us. Having a platform that is willing to partner with us as researchers and help us mentor the younger generation of researchers made the experience even better.

The supervision part was important, but once they get the hang of the Vivli platform and they know how to access the dataset, it really goes by much more effectively and efficiently. It’s a process from accessing the raw data to extracting it, analyzing it, making charts, and then sharing it, whether in terms of presentations or manuscripts. All of these steps from accessing data to analyzing to sharing, whether in terms of a conference or a paper, are different stations and different opportunities for mentoring people who are entering into the medical workforce. For me, looking forward at what those students—and now physicians—are doing and how they’re going to carry that into their own careers and mentor the next generation, it’s really an exponential impact.

You practice medicine, as well as researching. Can you tell us a bit about how continuing to practice medicine affects your perspective as a researcher?  

My practice is primarily breast cancer. A lot of the cases that we see are challenging and don’t have a straightforward answer, and we have to scratch our heads to find the optimal treatments according to the best evidence. In doing that process and seeing patients in the clinic, we come up with new questions that we don’t have an answer to every day.

Vivli is an excellent partner and a resource for us to inquire about those questions and find answers through rigorous clinical research and secondary analyses. It really takes a village to come up with answers and clinically meaningful outcomes.  I find this exercise of coming up with questions in the clinic, taking them back to the research drawing board, and bringing those answers back to the clinic to be a very fruitful one.

Your research was recently cited in the updated guideline for breast cancer radiation therapy. Could you talk a bit about that?

Recently, the American Society for Radiation Oncology (ASTRO) decided to update their guideline for radiation therapy for breast cancer. The prior guideline was 11 years old. You can imagine how much new data became available, whether from our group or others, during this 11-year period. Fortunately, they recognized this as an area of need.

The part that was assigned to me to lead as part of the committee was actually the part that I had researched using the data provided by Vivli, so it was full circle for me. What we’ve done is to capture data that came up, including secondary analyses from clinical trials—using data like that available from Vivli—and cite that data as evidence for guiding practitioners on how to treat specific types of breast cancer cases with radiation therapy.

Thinking about your patients, is that what you hope the outcome will be? Something like that guideline?

There is not a single case that we see in the clinic that is identical to the prior case. Each case is unique in several aspects. In situations where the quality of the evidence is not very high or there are grey zones where we lack evidence, I share that with my patients. Being focused and specialized in a certain domain really gives you that edge to bring to your patients the latest and greatest research, rather than having them use open, non-resource-verified sources online. Making that step easier on the patients at a time when they have so many things on their plate is very important.

What Vivli is doing on a bigger scale is really impacting healthcare in so many ways, specifically cancer care. I’m grateful for having the opportunity to use Vivli for research, and I think the process made me a better physician for my patients.

Novartis joins Vivli as a member to share its data

“We are delighted to have Novartis join as a member of Vivli, particularly given its rich and long history,” said Rebecca Li, Vivli CEO. “We look forward to working with the team at Novartis to make these data easily available to researchers who want to analyze Novartis data alongside that of other Vivli members.”

For more information about the conditions for accessing Novartis data, please visit their member page. For additional information about membership in Vivli, learn more here.

Novo Nordisk joins Vivli as a member

“We are delighted to have Novo Nordisk join as a member of Vivli, particularly given it’s innovative and life-changing drugs,” said Rebecca Li, Vivli CEO. “We look forward to working with the team at Novo Nordisk to share their data to meet their data sharing commitments.”

Novo Nordisk is committed to sharing information about clinical studies and their results.

For more information about the conditions for accessing Novo Nordisk data, please visit their member page. For additional information about Membership in Vivli, learn more here.

Vivli is seeking an Executive Director for Vivli Europe

Vivli is seeking an Executive Director for Vivli Europe (Vivli EU Stichting, in formation).

Location: Amsterdam (Netherlands / Hybrid – remote within the EU considered possible for exceptional candidates)

Organization: Vivli EU

Vivli is a global nonprofit platform advancing human health through responsible sharing and reuse of clinical research data. With members across industry, academia, and government, Vivli provides a trusted environment where researchers can discover, request, and analyze data securely. We are now establishing Vivli Europe, a Netherlands-based Stichting that will deepen Vivli’s European partnerships. The Executive Director will lead Vivli EU once formally registered and guide its early growth.

As Executive Director, you will:

  • Lead the launch and growth of Vivli Europe, ensuring alignment with Vivli’s global mission and strategic vision
  • Build strategic partnerships with EU institutions, research infrastructures, and funders
  • Represent Vivli EU in European policy and regulatory dialogues related to data sharing initiatives
  • Oversee EU operations, governance, and a small Amsterdam-based team

We seek a mission-driven leader who has successfully worked across various EU institutions or consortia and can bridge the worlds of science, policy, and data.

Experience collaborating across academia, government, and industry is essential.

Qualifications:

  • 10+ years leading cross-sector or international research or policy programs
  • Direct experience engaging with EU institutions or frameworks
  • Demonstrated grasp of EU health-data policy
  • Proven ability to build partnerships and manage nonprofit or collaborative operations
  • Excellent communication and relationship-building skills across diverse stakeholders

Compensation: Salary and benefits aligned with senior nonprofit roles in the EU.

To apply, please submit a cover letter and CV to HR@vivli.org with “EU Director” in the subject line.

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.