Version 3.9 of the Vivli platform was released February 28th, 2026 and is now available to users. Highlights of the release include:
Updated Organization Administrator Dashboard: Organization Administrators now have an improved dashboard showing Data Requests, Publications, Data Upload, and Enquiries awaiting their action. Dashboard information can also be downloaded.
Multi-Factor Authentication: Multi-factor authentication for user login is being rolled out over the coming weeks. Users will receive an email before this is activated on their account.
Data Request Form Enhancements: Users can now download the data request form, compare different versions of the form as a PDF as part of the version history of a request, and remove a research team member while a request is in draft.
Data Request Summary Report: A new report of the Data Request Summary is available for your team to access at any time.
All Vivli resources and how to guides have been updated to reflect the latest release
“Vivli is delighted to provided additional benefit to our users, which we have prioritized enhancing these features based upon their feedback,” said Julie Wood, COO Vivli. “We would encourage all users to sign up to provide feedback so we can continue to improve the platform to meet their needs”
Researchers can complete the form below to sign up and take part in user interviews.
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Byeongzu Ghang is an Associate Professor and Rheumatology Specialist in the Jeju National University School of Medicine, Jeju, Korea. His primary research and clinical focus is on gout, inflammatory myositis, and interstitial lung disease (ILD). Dr. Ghang’s team submitted a research proposal to access Vivli to conduct analysis relevant to their topic, “Reanalysis of CARES study to investigate the changes of estimated glomerular filtration rate after long-term febuxostat or allopurinol treatment in gout patients.” The team’s completed research has recently been presented to the research community in publications including the Journal of Rheumatic Diseases and Kidney International. He sat down with Vivli to tell us more about accessing individual participant data to advance this research, and the potential for using biomarkers to improve clinical research focus and therapeutic targets.
Tell us more about your research. What is the current state of management in your public disclosure topic?
Our research focuses on the impact of urate-lowering therapy (ULT) in delaying the progression of chronic kidney disease (CKD) in patients with gout. Through a post-hoc analysis of the CARES trial, we discovered that maintaining low serum uric acid (sUA) levels, particularly below 6 mg/dL, is significantly associated with a reduced risk of CKD progression. This finding challenges earlier conclusions drawn from trials on asymptomatic hyperuricemia, which often excluded patients with gout. Currently, ULT remains underutilized in CKD management, with uncertainty surrounding its benefits for kidney function. Our study provides compelling evidence supporting its protective role in gout patients.
What led you to want to research this topic?
The intersection of gout, hyperuricemia, and CKD is a clinical area with considerable unmet needs. While hyperuricemia is linked to CKD progression, whether this relationship is causal has been debated. My clinical experiences with gout patients experiencing CKD progression, combined with the lack of robust evidence in this domain, motivated me to explore whether ULT could serve as a meaningful intervention. Furthermore, the potential of addressing CKD progression through a modifiable risk factor like sUA levels was an appealing avenue for research.
What difference do you hope your research might make in the field/for patients and how has it moved forward the treatment of patients?
We aim to bridge the gap in understanding the renal benefits of ULT specifically for gout patients, a group often overlooked in earlier trials. By demonstrating that sustained low sUA levels correlate with stable or improved renal function, our findings can influence clinical guidelines to integrate ULT more robustly into CKD management for gout patients. This research could ultimately improve patient outcomes by reducing CKD progression, thereby decreasing dialysis dependency and associated healthcare burdens.
How could your findings be used in future clinical trials on this disease area?
Our findings provide a strong rationale for designing clinical trials focusing on ULT in gout patients with varying CKD stages. Future studies could investigate optimal sUA targets, the long-term renal outcomes of ULT, and the role of MSU crystal reduction in kidney protection. Furthermore, the mechanistic insights from our study can guide the exploration of novel therapeutic targets in CKD progression.
How did the data you accessed through Vivli help you in answering your research question?
The Vivli platform was instrumental in providing patient-level data from the CARES trial. This enabled us to perform a detailed post-hoc analysis, including propensity score matching and multivariable regression, to evaluate the relationship between sUA levels and CKD progression. Without this access, it would have been impossible to derive such granular insights into the renal benefits of ULT.
What was your experience like in the process of requesting data using the Vivli platform?
The Vivli platform provided a seamless experience in requesting and accessing trial data. Its user-friendly interface and comprehensive repository allowed us to identify and utilize relevant datasets efficiently. The robust data-sharing policies and support provided by Vivli enhanced the overall research process.
Would you use the Vivli platform again? Would you recommend Vivli to others? What improvements would you recommend?
Absolutely, I would use Vivli again and highly recommend it to other researchers. It is a valuable tool for accelerating scientific discovery. However, one area for improvement could be the inclusion of more real-time assistance during the application process, especially for first-time users navigating data access requirements.
What advice would you give to other researchers about doing this kind of analysis?
Thoroughly understand the dataset and its limitations before diving into analysis. Predefine your hypotheses and statistical methods to maintain rigor and transparency. Also, collaborating with experts in biostatistics and clinical data interpretation can add significant value. Lastly, platforms like Vivli are invaluable for accessing high-quality data, so researchers should familiarize themselves with such resources.
Ghang B, Kim J, Yoo. BPOS0284 CHANGES OF ESTIMATED GLOMERULAR FILTRATION RATE AFTER LONG-TERM FEBUXOSTAT OR ALLOPURINOL TREATMENT IN GOUT PATIENTS. Annals of the Rheumatic Diseases 2022; 81:386. https://ard.bmj.com/content/81/Suppl_1/386.1.full
Byeongzu Ghang, Jinseok Kim. Effects of long-term febuxostat or allopurinol on the progression of chronic kidney disease. Journal of Rheumatic Diseases, Vol. 29, Suppl. 1, May 2022 p271 O-54.
Ghang, B. Delayed progression of chronic kidney disease in gout patients during urate-lowering therapy: A patient-level post-hoc analysis of the CARES trial. International Journal of Rheumatic Diseases, 27 (Suppl. 2) P013. http://doi.org/10.1111/1756-185X.15172.
Ghang, B., Park, J., Lee, J.S., Lim, J.S., Kim, H., Liew, D.F., Kim, J., Kang, D.H. and Yoo, B., 2024. Post-hoc analysis of the CARES trial suggests delayed progression of chronic kidney disease in patients with gout during urate-lowering therapy. Kidney International. http://doi.org/10.1016/j.kint.2024.10.022.
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.
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.
On November 14, Vivli CEO Rebecca Li, PhD, will speak at the Nexus of Open Science, hosted by Johns Hopkins University. This one-day symposium will bring together leaders in neuroscience, clinical research, biomedical engineering, and data science to discuss open science practices, data sharing policies, and more.
Dr. Li will speak to Johns Hopkins faculty and students about how researchers can share and access clinical trial data securely via the Vivli platform. She will highlight the importance of sharing trial data, the value of secondary research, and how to access data via the Vivli platform. Finally, she’ll offer real-life examples of how researchers have leveraged the Vivli platform to advance health research. Learn more.
At Vivli, we recognize that sharing clinical trial data responsibly begins with protecting participants’ privacy. We’ve developed a guide that illustrates how we transform raw trial records into fully anonymized clinical trial datasets suitable for secondary research.
The guide highlights three stages:
Source Data: Direct observations, lab results, and participant records are captured at investigative sites.
Pseudonymized/De-Identified Data: Subject IDs replace names, and identifiers are coded, but a key is preserved.
Anonymized Data: The link to identifiers is permanently broken, and additional safeguards, such as age banding, date shifting, and redacting sensitive narratives, are implemented to reduce the risk of re-identification.
This approach aligns with the Future of Privacy Forum’s A Visual Guide to Practical Data De-Identification, which provides an overview of data identifiability applicable to many industries, such as banking, research, and technology. Vivli’s framework is specific to the clinical trial context, showing the journey from source data to the anonymized datasets available through our platform.
Together, these resources offer complementary perspectives: one illustrating broad principles of de-identification and anonymization, the other mapping the practical pathway within clinical research. Both advance the goal of protecting privacy while enabling data reuse.
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.
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.
2025 Vivli Annual Meeting attendees annotating 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 wants to hear from you! We are seeking researchers for user interviews about the platform. These virtual interviews are approximately 30 minutes to 1 hour.
Users selected for interviews will be asked about their experience with the platform, including why they began using the platform, what is working well, what improvements could be made, and more. Whether you are new to the platform or have been using it for years, your perspective is valuable.
User interviews may be used to inform future improvements to the platform or in communications and promotions on Vivli.org, social media, and other channels.
Complete the form below to be considered. We will follow up with more information if you are selected to be interviewed.
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.
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.
The 2025 Vivli Annual Meeting was held at Loeb House at Harvard University in Cambridge, MA, and virtually on Thursday, October 23.