News & Events

Rebecca Li, Vivli CEO, to speak at The Schaefer School of Engineering and Science at Stevens

Vivli is pleased to announce that CEO Rebecca Li has been invited to speak at The Schaefer School of Engineering and Science (SES) at Stevens on Wednesday, October 16, 2024. She has been invited by Center for Global Clinical Research Data to speak as part of the Dean’s Distinguished Lecture Series, on the topic of “Driving Scientific Innovation Through Data Sharing.”

Li’s talk will examine the critical role of data sharing in fostering scientific progress and making well-informed decisions in clinical practice. She will draw on her 25 years of experience in the drug development process spanning the Biotech, Pharma, and NIH environments, as well as her work in founding and building the Vivli data repository over the past five years. 

This in-person event will be open to all SES faculty, staff, students, alumni, and invited guests; information on attending is available here



Rebecca Li, Vivli CEO, to join information session at #SCDM24

Vivli is pleased to announce that Rebecca Li will take part in an information session during the upcoming #SCDM24 Annual Conference. This event will take place in Boston September 29-October 2, 2024.

Li will participate in a session focusing on “nuts and bolts, best practices, and lessons learned on patient data sharing.” She will join colleagues Rebecca (Becky) Wilgus of the Duke Clinical Research Institute, Qiaoli (Lily) Chen of Pfizer, Jane Perlmutter of Gemini Group, and Marissa Stroo of the Duke University School of Medicine to share practical and applicable information that supports adoption of open data science, data sharing, and responsible data reuse from #clinical trials. 

SCDM24 will bring leading experts in clinical data management together with the wider community.
Get complete information and register to join in person

 



Robert Conklin

As Chief Technology Officer at Vivli, Robert Conklin is at the forefront of utilizing technological innovation to advance the state of clinical research. With over 25 years of experience in technology, Robert blends a deep understanding of scientific research with a approach to technological advancement.

In his role as CTO at Vivli, Robert leads the strategic direction for technology adoption and integration. His expertise spans a broad spectrum of areas, including data management, clinical trial automation, communication, and data security. He uses this expertise to further advance the Vivli platform, helping the world’s researchers to create new knowledge from the data that our members have shared.

Robert is passionate about leveraging emerging technologies to solve pressing challenges in clinical research to further the advancement of human knowledge. He has been instrumental in driving innovations that improve patient recruitment, streamline regulatory compliance, and ensure data integrity. His contributions have increased the speed, efficacy and safety of clinical trials at scale, and helped to create new knowledge.

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 Senior Advisor speaks at CDISC 2023 Japan Interchange Program

Vivli Data Request Process

Vivli Senior Advisor Azusa Tsukida spoke at Clinical Data Interchange Standards Consortium (CDISC) 2023 Japan Interchange Program on July 10.

Tsukida presented during the session on ‘Real World Data & Regulatory Presentations/Perspectives’. Her talk focused on the benefits of data sharing, using case studies from data contributors who are sharing high-quality data via the Vivli platform to enable access to researchers worldwide and contribute to scientific discovery.

CDISC works to develop and advance data standards to support transforming incompatible formats, inconsistent methodologies, and diverse perspectives into a coherent framework for generating clinical research data that is accessible, interoperable, and reusable. More than 80% of the data available in Vivli is formatted in the CDISC-SDTM standard.

Find out more about how you can request data from Vivli’s repository and help accelerate the progress of health research.

Vivli Board names Rebecca Li CEO

Vivli announced that its Board of Directors has promoted Rebecca Li to the position of CEO. Li previously held the position of Executive Director and has been with the Vivli since its founding when it launched as a project from the MRCT Center of the Brigham and Women’s Hospital and Harvard.

“Rebecca has overseen the extraordinary growth of Vivli from the start and we are excited that she will continue to lead Vivli through the next phase of growth as we aim to go even further in our mission to make clinical trial available for research. She has demonstrated herself to be an exceptional team leader and strategic thinker with a clear vision for how we will develop globally in the coming years,” said Dr. Michael Stebbins, Vivli’s Board Chair.

“I am privileged to lead Vivli and envision further expanding our successful platform technology into Europe and Asia as we enter our next phase of innovation and growth” said Dr. Rebecca Li.

Vivli was founded in 2018 as a non-profit organization that is currently the largest individual participant-level (IPD) data sharing platform focused on sharing clinical trial data serving the international research community.

 

Vivli Executive Director Dr. Rebecca Li Speaking at NIA-DUKE-Alzheimer’s Association Workshop

Rebecca Li will be speaking at the NIA-DUKE-Alzheimer’s Association Workshop held on March 15-16th sponsored by the National Institute on Aging.

The focus of the talk by Rebecca Li and Katherine Welsh-Bohmer (Duke University School of Medicine) is on how the Vivli platform can be used to access trials in Alzheimer’s Disease. Dr. Welsh-Bohmer will discuss the TOMMORROW trial – a large prevention study in Alzheimer’s Disease – as a specific use case.

 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.

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    Vivli team authors new publication in Health Data Science

    The Vivli team, led by Executive Director Rebecca Li, recently authored a paper entitled “Health Data Sharing Platforms: Serving Researchers through Provision of Access to High-Quality Data for Reuse.” This paper aims to raise awareness of the ecosystem of health-related data sharing platforms available for researchers to access high-quality data, and thus advance science by accelerating their scientific goals.

    Vivli’s ultimate goal is to continue to grow our repositories (Vivli and the AMR Registry) to include more data available for reuse, to broaden the availability of data for researchers and raise awareness of these platforms amongst the scientific community to utilize these freely available valuable resources for their research.