News & Events

Tag: biomedical research

Vivli launches Portals to support more effective data sharing and data reuse

Vivli is delighted to announce the launch of our new Portals feature, designed to highlight therapeutic areas of interest to the research community. One of our first portals focuses on available data relevant to HIV/AIDS, a priority area of research focus for NIH. 

We’ve designed Portals to make data from HIV/AIDS clinical trials more visible and discoverable. Vivli’s repository of data is built on nearly 7,000 research studies across a wide range of research areas, and includes a growing number being shared by individual researchers. This data repository provides a valuable resource for researchers to both share and access data that can be used to accelerate the progress of scientific research. 

Are you an HIV/AIDS researcher? We’d love to hear from you, whether you’ve got data to share or are interested in exploring our data resources to request. Explore our new HIV/AIDS Portal and find out more about how Vivli can support your research.

 

This is funded in whole or in part with Federal funds from the Office of AIDS Research, National Institutes of Health, 1OT2DB000003-01, awarded to Vivli.

Vivli CEO Rebecca Li to speak at the NIDDK Central Repository 20th Anniversary Workshop

Vivli’s CEO, Rebecca Li, will speak at the NIDDK Central Repository 20th Anniversary Workshop: Promoting Secondary Research to Accelerate Medical Breakthroughs and Innovation. This online event, hosted by the National Institute of Diabetes and Digestive and Kidney Diseases, will take place on September 19-20, 2023.

Li will participate as a panelist in a discussion session on ‘Supporting NIDDK-Funded Research and Expanding NIDDK’s Data Ecosystem’. This session will focus on real-world examples in which NIDDK-funded research is strengthening the data ecosystem and accelerating medical breakthroughs through secondary research, and is scheduled to run on Wednesday, September 20. NIDDK has been making data available to researchers in the Vivli repository since 2022.

The 20th Anniversary Workshop will review the NIDDK Central Repository program from its early beginnings to its current state, and engage a diverse range of experts from the research community to share experiences and explore future possibilities. Registration is open until Tuesday, September 19 – find out more and register on the event website. 

Vivli to host workshop at 2023 Cochrane Colloquium

Vivli will host a workshop at the 2023 Cochrane Colloquium in London on September 4. The Cochrane Colloquium is an annual event for Cochrane in support of its mission to promote evidence-informed health decision-making. 

Vivli’s workshop will focus on “Practical advice for accessing patient-level data from a data sharing platform for evidence synthesis.” This session will provide: 

  • an introduction to the Vivli platform, including an overview of data available and hands-on group work on how to submit a request for data
  • an overview of first-hand experience of using patient level data using Vivli’s data sharing platform as a case study 
  • a discussion session focusing on some of the opportunities and challenges associated with using patient level data (for example: what to do when data needed to answer the hypothesis is not available via a single data sharing platform?)

This session will be a mixture of hands-on practice and opportunities to hear from researchers who have used the platform, patient advocates, and data providers. There will also be time for participants to ask questions about the data access process. 

Vivli Senior Director Julie Wood will be joined by Alan Chant, the patient representative on the Independent Review Panel; Catrin Tudur Smith from the University of Liverpool; and Rebecca Sudlow from Roche to facilitate this workshop. 

For more information on the 2023 Cochrane Colloquium and to register for this session, please see the event schedule. Please note that participation in this session is open only to registered Colloquium attendees. 



Vivli celebrates publication of 200th public disclosure

Vivli celebrates 200 public disclosures

Vivli is delighted to announce publication of the 200th public disclosure resulting from the research team’s work with data from the Vivli platform. 

Rebecca Li, the Chief Executive Officer of Vivli, congratulates all the research teams who have utilized data from the Vivli platform to advance health research through the re-use of valuable clinical trial data. She also acknowledges the organizations, individuals, and thousands of trial participants who have generously shared their data, making this milestone possible.

The Vivli repository houses data from nearly 7,000 trials,  representing the contributions of 1.8 million clinical trial participants. On average, Vivli public disclosures are cited approximately 2.2 times per publication and appear in a wide range of highly-ranked academic journals. 

For more information about how to share and re-use data on the Vivli platform, please visit our Resources page.



 NIH’s New Data Sharing Policy: Maximizing the Value of Research through Data Re-use and Data Access on the Vivli Repository

Learn how the Vivli repository is making it easier for scientists to share and access data, and how you can comply with the NIH’s data management and sharing policy (DMSP) to maximize the value of your research

The National Institutes of Health (NIH) has a policy in place to ensure that data generated by NIH-funded research is accessible to the scientific community starting on January 25, 2023.

Data should be made available as soon as possible or the acceptance for publication of the main findings from the final dataset but the latest date is the end of the award. Data sharing can be done through a variety of mechanisms, including NIH domain repositories or NIH generalist repositories. These can be open-access or controlled-access systems. One such controlled-access repository recognized by the NIH is Vivli, a generalist repository for sharing of clinical data for human research studies.

As a condition of their grant application, investigators are now required to prospectively plan for management of their data and preparing it for re-use, submit a data management and sharing plan (DMSP), and comply with the drafted plan. The NIH Data Sharing Policy (DSMP) encourages investigators to share their data in order to maximize the value of NIH research funds.  But what exactly is a DMSP and how do you draft one for submission to the Vivli Repository? The DMSP is a set of principles and guidelines that outline the requirements for sharing data generated by NIH-funded research. It includes 6 major elements that were selected to ensure that the data is shared as widely and promptly as possible, to maximize the scientific and public health value of the research, while protecting participant privacy and confidentiality. To fill out the DMSP, decisions should be made about the choice of repository, how long the repository will hold/archive the data, whether special tools/software will be provided to access the data, whether consensus data standards apply or exist, whether controlled access will be required and the oversight management details.

To help investigators on their journey to fulfilling the NIH data sharing policy, we have created a list of all the other resources available on our website, including the DMSP template guidance and budget guidance specific to using Vivli to help you navigate the process. Vivli has a step-by-step guide to understanding each of these elements and items to consider when developing a DMSP. We also have a customizable DMSP exemplary language available for download and adaptation, which includes sample text as well as guidance on preparing and submitting a budget as part of the DMSP.

Fill out the form below to access all the DMPS Guidance provided by Vivli.

Vivli has recently released new features timed to the NIH policy launch including: branded portals for research programs / institutions; academic credit; streamlined process for data sharing and reporting for institutions.

In summary, the NIH encourages data sharing as part of its mission to advance biomedical research and to promote collaboration among scientists. Vivli is a non-profit organization that provides a platform recognized by the NIH for funded researchers to share and access anonymized clinical trial data in a secure and compliant way.

    What best describes your current role?

    Do you plan to include Vivli in any future data management plans?

     

    Share NIH-Funded Data

    Guidance for researchers on preparing a DMSP and sharing NIH-funded data

    The NIH has updated its policies on data management and sharing (DMS). Effective January 25, 2023, the NIH DMS policy applies to most research funding by the NIH, and requires all applicants planning to generate scientific data to prepare a DMS Plan (DMSP) that describes how they will manage and share data. An effective DMSP requires thoughtful planning, preparation, and execution. We’ve compiled information and resources here to support every step of the process.

    How to prepare a DMSP

    The DMSP is a set of principles and guidelines that outline requirements for sharing data generated by NIH-funded research. It includes six major elements:

    1. A description of the data type
    2. Related tools, software, and/or code
    3. Common data standard that will be applied to the data
    4. Information about data preservation, access, and associated timelines
    5. Factors affecting access, distribution, or reuse of data
    6. Overview of how compliance with plans for management and sharing will be managed

    The DMSP should also include information about direct costs required to support the activities outlined in the Plan.

    Vivli has a step-by-step guide to understanding each of these elements and items to consider when developing a DMSP. We also have a customizable DMSP exemplary language available for download and adaptation, which includes sample text as well as guidance on preparing and submitting a budget as part of the DMSP.

    Fill out the form below to access all the DMSP Guidance provided by Vivli.

      What best describes your current role?

      Do you plan to include Vivli in any future data management plans?

      How to choose the right repository to share your data

      To enable the implementation of the updated DMS policy, NIH has supported the establishment of the Generalist Repository Ecosystem Initiative (GREI). GREI is a collaboration of seven established generalist repositories who are working together to develop consistent standards and processes to facilitate sharing and reuse of data from NIH-funded studies. As part of preparing a DMSP, researchers will have the opportunity to review repository options and choose the one that best aligns with their needs. Vivli is part of the GREI initiative. The Vivli platform is the only GREI repository that focuses on sharing completed clinical research data at the individual participant level. To assist in considering these options, NIH has prepared guidance on selecting a data repository.

      Once your grant is approved – what next?

      How to submit studies to Vivli for data sharing

      If you’ve decided that Vivli is the right repository for your study data, great! We’ve developed a straightforward and efficient submission process, and we’ve got detailed guidance on how to submit your data and a checklist when you’re ready to begin the process to share your data.

      ResourceDescription
      Vivli Study Submission GuideHow to submit studies for sharing via the Vivli platformDownload PDF
      Study Submission ChecklistA checklist of all information needed for the submission of a studyDownload

      Further questions?

      Email Vivli at support@vivli.org and we will be delighted to assist you.

       

      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. Vivli platform metrics as of 28 Feb 2025. The metrics will be updated every two months.

      These tables provide details of approved research proposals that have published or presented their results.

      How to Guides

      Vivli provides the following resources to assist users of the Vivli Platform:

      Data Request Guidance and Support

      ResourceDescriptionLink
      Vivli User Account Quick Start guideHow to join the Vivli platform as a user so that you can submit a request for study data.Download PDF
      Vivli How To – Sign up for a Vivli AccountVideo detailing how to sign up for a Vivli platform accountWatch Video
      Vivli How To – Requesting StudiesHow to request studies through the Vivli platform.Download PDF
      Vivli Data Request Quick Start (Video)A 3-minute video showing how to submit a data request.Watch video
      Vivli Platform demo – How to search, request, and analyze data on VivliA short video showing how to request data on VivliWatch video
      Vivli Lay Summary Training VideoHints and tips for completing your Vivli Lay Summary as part of your data request.Watch video

      Download PDF
      Vivli Data Request Form WorksheetWorksheet of information needed to complete a Vivli data requestDownload
      Vivli Data Request Form Tips and TricksHints and tips for completing your Vivli Data Request Form.Download PDF
      Data Request Form SampleExample of fully completed Data Request FormDownload PDF
      Vivli Policies in BriefSynopsis of key policies governing interactions between researchers and data contributors during the lifecycle of a research proposal.Download PDF
      Software and R Packages Available in the Research EnvironmentAnalytical and other software available in the research environmentDownload PDF
      Vivli AI/ML Model RequirementsVivli's AI/ML policy outlines strict requirements for model data anonymization and limits export to traditional machine learning models.Download PDF

      Study Submission Guidance and Support

      ResourceDescription
      Vivli User Account Quick Start guideHow to join the Vivli platform as a user so that you can submit your study.Download PDF
      Vivli How To – Sign up for a Vivli AccountVideo detailing how to sign up for a Vivli platform accountWatch Video
      Vivli Study Submission GuideHow to submit studies for sharing via the Vivli platformDownload PDF
      Vivli How To – Study submissionData sharing instructional videoWatch Video
      Study Submission ChecklistA checklist of all information needed for the submission of a studyDownload
      ICMJE Data Sharing RequirementsHow to use Vivli to meet ICMJE data sharing requirementsDownload PDF

      NIH DMSP Guidance

      Fill out the form below to access all the DMSP Guidance provided by Vivli.

        What best describes your current role?

        Do you plan to include Vivli in any future data management plans?

         

        Vivli Metrics

        metricsVivli 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. Vivli platform metrics as of 28 Feb 2025. The metrics will be updated quarterly.