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Vivli Researcher Spotlight: Dr. Byeongzu Ghang on investigating whether urate-lowering therapy (ULT) is effective in delaying the progression of chronic kidney disease (CKD) in patients with gout

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.

Further reading

Reanalysis of CARES study to investigate the changes of estimated glomerular filtration rate after long-term febuxostat or allopurinol treatment in gout patients (Vivli Research Request 7388).

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.

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.

Vivli CEO Rebecca Li to speak about Vivli at the Nexus of Open Science symposium

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.

From Source Data to Anonymized Data: Protecting Privacy in Clinical Research

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.

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.

A participant indicates their interest in a topic with a red dot
A participant indicates their interest in a topic with a red dot
A participant indicates their interest in a topic with a red dot
A participant indicates their interest in a topic with a red dot
A participant indicates their interest in a topic with a red dot
Two participants observe the boards during the 2025 Vivli Annual Meeting
Three participants observe the boards during the Vivli Annual Meeting
Two participants indicate their interest in topics 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 user interview interest form

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.

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    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 Challenge – Lessons 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 Challenge – Lessons 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.