News & Events

Tag: data reuse

Public Disclosures

Vivli aims to advance human health through clinical research data sharing. One of the key ways we support this is through the Vivli platform, which facilitates data sharing for research teams working on a range of topics. These tables provide details of approved research proposals that have published or presented their results.

Top publications by PubMed citations
YearData Request IDLead InvestigatorInstitutionResearch Proposal TitlePublic DisclosureData Contributor(s)Altmetric ScorePubMed Citation Total
20236104Pratik Sinha Washington University Heterogeneous treatment effects in molecular phenotypes of sepsisSinha, P., Kerchberger, V.E., Willmore, A., Chambers, J., Zhuo, H., Abbott, J., Jones, C., Wickersham, N., Wu, N., Neyton, L. and Langelier, C.R., 2023. Identifying molecular phenotypes in sepsis: an analysis of two prospective observational cohorts and secondary analysis of two randomised controlled trials. The Lancet Respiratory Medicine.

Doi:10.1016/S2213-2600(23)00237-0 		Lilly
81
20215096Joo Sang LeeSamsung Medical Center, South KoreaHarnessing genetic interactions to advance precision cancer medicineSynthetic lethality-mediated precision oncology via the tumor transcriptome. Lee, Joo Sang et al.
Cell, Volume 184, Issue 9, 2487 - 2502.e13.

doi: 10.1016/j.cell.2021.03.030		Tempus AI, Inc.
69
20234113Lesley Inker Tufts Medical Center Chronic Kidney Disease Epidemiology - Clinical Trials Consortium (CKD-EPI CT)Inker, L.A., Collier, W., Greene, T., Miao, S., Chaudhari, J., Appel, G.B., Badve, S.V., Caravaca-Fontán, F., Del Vecchio, L., Floege, J. and Goicoechea, M., 2023. A meta-analysis of GFR slope as a surrogate endpoint for kidney failure. Nature Medicine, pp.1-10.

Doi: 10.1038/s41591-023-02418-0 		GlaxoSmithKline, Takeda
54
20204540Chris GaleUniversity of LeedsEfficacy and safety of edoxaban versus warfarin in patients with atrial fibrillation and frailty insights from the ENGAGE AF-TIMI 48 trialWilkinson, C., Wu, J., Searle, S.D. et al. Clinical outcomes in patients with atrial fibrillation and frailty: insights from the ENGAGE AF-TIMI 48 trial. BMC Med 18, 401 (2020).

doi: 10.1186/s12916-020-01870-w		Daiichi Sankyo
54
20237875Marco ValgimigliCardiocentro Ticino, Lugano and Universita della Svizzera ltaliana (USI)P2Y12 inhibitor or Aspirin moNoTHERapy as secondary prevention in patients with coronary artery disease: in individual patient data meta-analysis (PANTHER collaborative initiative)Gragnano F, Cao D, Pirondini L, Franzone A, Kim HS, von Scheidt M, Pettersen AÃ…, Zhao Q, Woodward M, Chiarito M, McFadden EP, Valgimigli M. PANTHER. P2Y12 inhibitor or aspirin monotherapy for secondary prevention of coronary events. Journal of the American College of Cardiology. 2023 Jul 11;82(2):89-105.

doi: 10.1016/j.jacc.2023.04.051		Sanofi
51
20224116Sharon StraussSt. Michael’s HospitalComparative safety and effectiveness of cognitive enhancers for Alzheimer's dementia a systematic review and individual patient data network meta-analysisVeroniki AA, Ashoor HM, Rios P, et al. Comparative safety and efficacy of cognitive enhancers for Alzheimer’s dementia: a systematic review with individual patient data network meta-analysis BMJ Open 2022;12:e053012.

doi: 10.1136/bmjopen-2021-053012		AbbVie
50
20227074Gregory YH LipUniversity of LiverpoolImpact of atrial fibrillation and the effects of comorbidities and treatment on disease progression and outcomesRomiti GF, Proietti M, Bonini N, Ding WY, Boriani G, Huisman MV, Lip GYH; GLORIA-AF Investigators. Clinical Complexity Domains, Anticoagulation, and Outcomes in Patients with Atrial Fibrillation: A Report from the GLORIA-AF Registry Phase II and III. Thromb Haemost. 2022 Aug 29.

doi: 10.1055/s-0042-1756355		Boehringer Ingelheim
50
20204116Sharon StrausSt. Michael's HospitalComparative safety and effectiveness of cognitive enhancers for Alzheimer's dementia a systematic review and individual patient data network meta-analysisVeroniki AA, Ashoor H, Rios P, Seitidis G, Mavridis D, Holroyd-Leduc J, Straus S, Tricco A. Comparative safety and efficacy of cognitive enhancers for Alzheimer’s dementia: An individual patient data network meta-analysis. In: Advances in Evidence Synthesis: special issue. Cochrane Database of Systematic Reviews 2020;(9 Suppl 1):455.

doi: 10.1002/14651858.CD202001		AbbVie
50
20205895, 6117Ashley HopkinsFlinders UniversityPredictors of exposure, therapeutic and adverse effects of atezolizumab used in the treatment of advanced cancersConcomitant Proton Pump Inhibitor Use and Survival in Urothelial Carcinoma Treated with Atezolizumab. Ashley M. Hopkins, Ganessan Kichenadasse, Christos S. Karapetis, Andrew Rowland and Michael J. Sorich.
Clin Cancer Res October 15 2020 (26) (20) 5487-5493;

doi: 10.1158/1078-0432.CCR-20-1876		Roche
49
20224329Shomron Ben-HorinSun Yatsen 1st affiliated HospitalEfficacy of biologic drugs in short-duration versus long-duration inflammatory bowel diseaseShomron Ben-Horin, Lena Novack, Ren Mao, Jing Guo, Yue Zhao, Ruslan Sergienko, Jian Zhang, Taku Kobayashi, Toshifumi Hibi, Yehuda Chowers, Laurent Peyrin-Biroulet, Jean Frederic Colombel, Gilaad G. Kaplan, Min-hu Chen. Efficacy of biologic drugs in short-duration versus long-duration inflammatory bowel disease: A systematic review and an individual-patient data meta-analysis of randomized controlled trials. Gastroenterology, 2021, ISSN 0016-5085.

doi: 10.1053/j.gastro.2021.10.037		AbbVie, Biogen, Johnson & Johnson, Takeda, UCB
48

Top publications by Altmetrics score
YearData Request IDLead InvestigatorInstitutionResearch Proposal TitlePublic DisclosureData Contributor(s)Altmetric ScorePubMed Citation Total
20259813Sameer JauharKing's College LondonConducting a systematic review and meta-analysis to assess the incidence and severity of withdrawal symptoms following discontinuation of antidepressantsKalfas, Michail, Tsapekos, Dimosthenis, Butler, Matthew, McCutcheon, Robert A., Pillinger, Toby, Strawbridge, Rebecca, Bhat, Bhagyashree Bhaskar, Haddad, Peter M., Cowen, Philip J., Howes, Oliver D., Joyce, Dan W., Nutt, David J., Baldwin, David S., Pariante, Carmine M., Lewis, Gemma, Young, Allan H., Lewis, Glyn, Hayes, Joseph F. and Jauhar, Sameer. "Incidence and Nature of Antidepressant Discontinuation Symptoms." JAMA Psychiatryvol. , no. , Jul. 2025, pp.

https://doi.org/10.1001/jamapsychiatry.2025.1362		Lilly, Lundbeck, Pfizer, Takeda
N/A
20236544Angela WuUniversity of OxfordInvestigating the association between smoking cessation and mental health in people with and without psychiatric disordersWu, A.D., Gao, M., Aveyard, P. and Taylor, G., 2023. Smoking Cessation and Changes in Anxiety and Depression in Adults With and Without Psychiatric Disorders. JAMA Network Open, 6(5), pp.e2316111-e2316111.

Doi: 10.1001/jamanetworkopen.2023.16111 		Pfizer
17
20255959John Dennis University of Exeter Medical School Stratification of SGLT2 inhibitor glucose lowering therapy in Type 2 diabetesDennis, J.M., Young, K.G., Cardoso, P., Güdemann, L.M., McGovern, A.P., Farmer, A., Holman, R.R., Sattar, N., McKinley, T.J., Pearson, E.R. and Jones, A.G., 2025. A five-drug class model using routinely available clinical features to optimise prescribing in type 2 diabetes: a prediction model development and validation study. The Lancet.

Doi: 10.1016/S0140-6736(24)02617-5		Boehringer Ingelheim, Takeda
N/A
20237875Marco ValgimigliCardiocentro Ticino, Lugano and Universita della Svizzera ltaliana (USI)P2Y12 inhibitor or Aspirin moNoTHERapy as secondary prevention in patients with coronary artery disease: in individual patient data meta-analysis (PANTHER collaborative initiative)Gragnano F, Cao D, Pirondini L, Franzone A, Kim HS, von Scheidt M, Pettersen AÃ…, Zhao Q, Woodward M, Chiarito M, McFadden EP, Valgimigli M. PANTHER. P2Y12 inhibitor or aspirin monotherapy for secondary prevention of coronary events. Journal of the American College of Cardiology. 2023 Jul 11;82(2):89-105.

doi: 10.1016/j.jacc.2023.04.051		Sanofi
51
20257810Diego Chowell Icahn School of Medicine at Mount Sinai Machine learning model to predict cancer immunotherapy responseYoo, S.K., Fitzgerald, C.W., Cho, B.A., Fitzgerald, B.G., Han, C., Koh, E.S., Pandey, A., Sfreddo, H., Crowley, F., Korostin, M.R. and Debnath, N., 2025. Prediction of checkpoint inhibitor immunotherapy efficacy for cancer using routine blood tests and clinical data. Nature Medicine, pp.1-12.

Doi: 10.1038/s41591-024-03398-5 		Roche
N/A
20259492, 8697 David McAllister University of Glasgow Understanding frailty, multimorbidity and renal failure in clinical trials: Attrition, retention and heterogeneity of treatment effects in trials for diabetes, cancer and a heterogenous set of index conditionsHanlon P., Butterly, E., Wei L. Age and Sex Differences in Efficacy of Treatments for Type 2 Diabetes. 2025. A Network Meta-Analysis. JAMA.

Doi: 10.1001/jama.2024.27402 		AstraZeneca, Boehringer Ingelheim, GlaxoSmithKline, Johnson & Johnson, Lilly, Roche, Sanofi, Takeda, UCB
20237743Caroline Quach CHU Sainte-Justine Is there a Difference in the Immune Response, Efficacy, and Safety of Seasonal Influenza Vaccine in Males and Females? - A Meta-AnalysisKiely, M., Tadount, F., Lo, E., Sadarangani, M., Wei, S.Q., Rafferty, E., Quach, C. and MacDonald, S.E., 2023. Sex differences in adverse events following seasonal influenza vaccines: a meta-analysis of randomised controlled trials. J Epidemiol Community Health.

Doi: 10.1136/jech-2023-220781 		Sanofi
4
20225933, 5208Ahmad AbuhelwaUniversity of South AustraliaPredictors of exposure, therapeutic and adverse effects of certolizumab pegol and baricitinib used in the treatment of rheumatoid arthritisDaraghmeh DN, Hopkins AM, King C, Abuhelwa AY, Wechalekar MD, Proudman SM, Sorich MJ, Wiese MD. Female reproductive status and exogenous sex hormone use in rheumatoid arthritis patients treated with tocilizumab and csDMARDs. Rheumatology (Oxford). 2022 Jun 22:keac357.

doi : 10.1093/rheumatology/keac357		Roche
2
20235951, 4543Mathilde NijkeuterUMC UtrechtIndividualized prediction of recurrence risk reduction and risk of bleeding with extended anticoagulation in patients with venous thromboembolismMaria A de Winter, Harry R Büller, Marc Carrier, Alexander T Cohen, John-Bjarne Hansen, Karin A H Kaasjager, Ajay K Kakkar, Saskia Middeldorp, Gary E Raskob, Henrik T Sørensen, Frank L J Visseren, Philip S Wells, Jannick A N Dorresteijn, Mathilde Nijkeuter, VTE-PREDICT study group. Recurrent venous thromboembolism and bleeding with extended anticoagulation: the VTE-PREDICT risk score. European Heart Journal, 2023;. ehac776.

doi: 10.1093/eurheartj/ehac776		Boehringer Ingelheim, Daiichi Sankyo
18
20237164Jörg EllingerUniversity Hospital BonnEvaluation of CRP (c-reactive protein) flare phenomena as an early predictor of response to the Atezolizumab + Bevacizumab therapy in renal cell carcinomaSaal, J., Bald, T., Eckstein, M., Ralser, D.J., Ritter, M., Brossart, P., Grünwald, V., Hölzel, M., Ellinger, J. and Klümper, N., 2023. Integrating On-Treatment Modified Glasgow Prognostic Score and Imaging to Predict Response and Outcomes in Metastatic Renal Cell Carcinoma. JAMA oncology.

doi: 10.1001/jamaoncol.2023.1822		Roche
13

Public disclosures by year 

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.

 

Vivli’s Incorporation of the Five Safes Framework

Vivli’s mission is to promote, coordinate, and facilitate scientific sharing and reuse of clinical research data. As a neutral broker between data contributor, data user, and the wider data sharing community, Vivli maintains the trust of our community and clinical research by placing the utmost value on the security and safety of the data available within the Vivli Platform, a secure research environment (SRE).

How does Vivli ensure that participant data provisioned within the SRE is used safely?

Vivli’s secure research environment aligns with the best practices established by the Five Safes framework. The UK Office of National Statistics initiated the framework, and other governments, institutions, and members of the data management community contributed to its refinement. Now internationally accepted as a standard, the framework ensures safe and secure access to data covering the lifecycle of data access within an SRE through five principles:

  • Safe People – all individuals who interact with the data are aware of their role in its protection
  • Safe Projects – projects are scientifically and ethically valid and deliver public benefit
  • Safe Data – potential for identifying participants is minimized
  • Safe Settings –organizational and technical controls to minimize the risk of disclosure
  • Safe Outputs – review of results and outputs to minimize the risk of disclosure

We provide examples of just a few ways we incorporate these principles into the Vivli Platform SRE.

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.

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 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.

Vivli Researcher Spotlight: Investigating the early stroke recurrence rate for people who have experienced minor strokes

Ischemic strokes are caused by temporary disruption of blood flow to the brain, and include transient ischemic attacks (TIAs), commonly known as mini-strokes, as well as minor and major strokes. TIAs and minor strokes do not usually have significant long-term effects in and of themselves, but they are important as warning signs of the potential risk of a more significant stroke.

In carrying out research, TIAs are often considered alongside minor strokes, or as a distinct category. However, there has not been significant research to date focusing on minor stroke as a distinct category, particularly with regard to the potential for recurrence in the short term. Developing a better understanding of minor stroke could help improve patient care as well as advance medical knowledge. In a recently completed study, Dr. Andy Lim and colleagues focused on answering the question of whether isolating data relevant to minor stroke could provide useful information about the potential for recurrence. 

This meta-analysis involved assessing individual patient data from 45,462 participants in 14 included research studies. The findings indicate that the pooled 90‐day stroke recurrence rate for minor stroke as a distinct category is 8.6%. Furthermore, this rate appears to be declining by 0.60% per year—a trend which seems consistent with those associated with improving outcomes associated with contemporary management of minor stroke and TIA assessed together, as well as for TIA outcomes assessed alone. 

Establishing a better understanding of the baseline recurrence rate of minor ischemic stroke can help with comparing new treatments, developing new clinical pathways, and identifying improved methods for managing care. Using the Vivli platform gave the research team access to data from Ticagrelor versus Aspirin in Acute Stroke or Transient Ischemic Attack (SOCRATES) trial data, which Dr. Lim described as “an important piece of our meta-analysis puzzle. Without it, we would not be able to complete the picture.”

Read more about Dr. Lim’s research:

Meta-analysis of early stroke recurrence rate in minor stroke (Vivli Research Request 6866)

Ninety‐Day Stroke Recurrence in Minor Stroke: Systematic Review and Meta‐Analysis of Trials and Observational Studies (Journal of the American Heart Association)

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.

Vivli webinar: Vivli and RDCA-DAP: Data Platform Partnerships to Promote Rare Disease Data Sharing

Julie Wood, Vivli Chief Operating Officer, will join colleagues from Vivli and C-Path for a webinar on Thursday, February 20 at 12:00 pm ET. Julie will present an overview of Vivli’s global data-sharing and analytics platform and how Vivli’s collaboration with RDCA-DAP is advancing data sharing in rare diseases.

In addition to Julie’s presentation, the webinar will also include a panel discussion on platform-to-platform collaborations, strategies for facilitating data sharing, an interactive Q&A session with participants, and more!

View the Recording

 



Vivli Member Spotlight: Duke University Medical School

Duke University is a global leader in developing and sharing innovative clinical research that improves patient care and outcomes. Duke University School of Medicine has been partnering with Vivli since 2018 to foster the principles of open science and data access from clinical studies. In a newly published case study, researchers discuss the value of Vivli’s generalist data repository to share, manage, and re-use valuable clinical data: 

Interested in finding out more about how you or your institution can use Vivli’s generalist repository to share, manage, and re-use data more efficiently? Get answers to your questions on our FAQ page or contact Vivli User Support directly at support@vivli.org.