News & Events

Vivli launches Ambassador Program

Vivli is delighted to announce the launch of the Ambassador Program. The Ambassador Program aims to raise awareness of the importance of data sharing and data reuse, and of the research opportunities available in the Vivli data repository. Successful Vivli Ambassadors will be eligible for financial support to attend conferences in their area of research specialty. A total of five travel grants of $2,500 are available for successful applicants. Vivli Ambassadors will also participate in user interviews and testing twice a year to contribute to ongoing development of the Vivli platform.

Researchers who have successfully completed a research project using data from the Vivli repository are eligible to apply to become a Vivli Ambassador. Vivli will contact eligible researchers directly via email, with an invitation to submit a brief proposal outlining their idea for promoting research using the Vivli data repository.

If you have questions about this initiative or think you might be eligible to apply and haven’t received an email by April 1, 2025, please get in touch at support@vivli.org.

Vivli Webinar: Unlock the Power of Data Analysis in Vivli: Practical approaches to understanding the data and delving deeper into the CDISC standard

Are you a researcher who has analyzed data on Vivli? Or has your research team already analyzed data in the Vivli platform but is looking for more efficient approaches?

This 3-hour training will provide researchers with a practical approach to understanding the data, provide an overview of CDISC, and how this data standard can help you understand the data. It is aimed at clinical researchers and biostatisticians interested in analyzing data in the Vivli platform. There will be an opportunity for participants to ask questions.

View the Recording

Topics include:

  • Understand the type of datasets and supporting documents received after approval.
  • Understand CDISC, SDTM and ADaM? How can these standards help make my analysis more efficient?
  • How to conduct reproducible, safe, open and efficient analyses with special considerations for secondary trial analyses within the Vivli environment.

Speakers & Panelists:

  • Jack Shostak, Director of Biostatistical Operations, Duke & CDISC instructor
  • David A McAllister, Professor of Clinical Epidemiology and Medical Informatics and Honorary Consultant in Public Health Medicine, University of Glasgow
  • Nicole Harmon, COO, CDISC
  • Rebecca Li, CEO, Vivli

View the Recording

 

Upcoming Webinar: The Power of Sharing Clinical Trial Data: How to Build a Data Sharing Program While Protecting Participant Privacy


Vivli is partnering with Real Life Sciences (RLS) to present this webinar on Thursday, February 20 at 10:00 am ET. Presenters will explore how RLS and Vivli enable secure data sharing for study sponsors. Participants will learn key steps to launching a data-sharing program and discover why empirical data anonymization techniques are essential for maintaining participant privacy while maximizing research value.

Get more information and register today.



Upcoming 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!

Get more information and register today.



Vivli Webinar: Navigating Clinical Trial Data Sharing Under the New Declaration of Helsinki: Practical Steps for Instituting an Ethical and Effective Program

In this webinar, we will discuss the new Declaration of Helsinki and how institutions can take practical steps to institute an ethical and effective data sharing program.

Join us on Thursday, January 23 at 8am PST/11am EST/4pm GMT, for a discussion with Vivli’s CEO Rebecca Li and COO Julie Wood about the top five questions companies or non-profit foundations should ask when they are considering embarking on a data sharing program.

View The Recording

Topics include:

  • Why should we share clinical trial data?
  • When should we begin a data sharing program?
  • How do we start to build a data sharing program?
  • How can we manage a data sharing program?
  • What can a partner like Vivli do for us?

Speakers:

  • Rebecca Li, CEO, Vivli
  • Julie Wood, COO, Vivli

View The Recording

Event: 2024 Vivli Annual Meeting – Innovations in Data Sharing

This event was held at Harvard Faculty Club in Cambridge, MA, on Friday, November 15, for the 2024 Vivli Annual Meeting, co-hosted with the MRCT Center of Brigham and Women’s Hospital and Harvard. The meeting focuses on Innovations in Data Sharing and features a keynote address from Steffen Thirstrup, CMO of the EMA. He speaks on the European Health Data Space.

 

RECORDINGS SPEAKER BIOGRAPHIES

Session topics focus on the following areas:

  • Keynote address: Steffen Thirstrup, EMA on European Health Data Space
  • Panel discussion on European Health Data Space
  • Health Information Exchanges
  • Risks and Opportunities in AI and data sharing

Agenda


 

Keynote: Steffen Thirstrup, CMO, European Medicines Agency (EMA)

Looking to the future: The opportunities for data sharing and the European Health Data Space

RECORDING


Panel Discussion: The Opportunities for data sharing and the European Health Data Space (EHDS)

Following on from the keynote address, panelists discuss the potential of the EHDS.

Moderator: Rebecca Li, CEO and Co-founder, Vivli

  • David Leventhal, Data Sharing & Disclosure Lead, Pfizer
  • David McAllister, Professor of Clinical Epidemiology and Medical Informatics, University of Glasgow
  • Steffen Thirstrup, CMO, EMA
  • Aneta Tyszkiewicz, Director, Digital & Data, EFPIA

RECORDING


Panel Discussion: Use of Health Information Exchange (HIE) data for research: legal and ethical challenges

The panel discusses challenges related to the use of HIEs and other U.S. data sharing frameworks for research purposes, including research recruitment, retrospective studies, and more.

Moderator: Barbara Bierer, Faculty Director, MRCT and Vivli co-founder

  • Jill De Graff, VP of Regulatory, b.well Connected Health
  • Irene Koch, Executive Vice President and Chief Legal Officer, Hospital for Special Surgery, New York City
  • David Peloquin, Partner, Ropes & Gray

RECORDING


Panel Discussion: Risks and Opportunities in AI and data sharing

Panelists discuss AI’s risks and opportunities for sharing and re-using data today and in the coming years.

Moderator: Ida Sim, Professor of Medicine and Computational Precision Health, University of California San Francisco; Vivli co-founder

  • Karla Childers, Head, Bioethics-based Science & Technology Policy, Johson & Johnson
  • Dawei Lin, Associate Director for Bioinformatics & Senior Advisor to the Director at DAIT, NIAID, NIH
  • Subha Madhavan, Vice President & Head of AI/ML, Quantitative & Digital Sciences, Research and Development, Pfizer and Vivli Board member
  • David Peloquin, Partner, Ropes & Gray

RECORDING


 

Vivli CEO Rebecca Li to participate in panel discussion for Harnessing the Potential of Patient-Level data in Clinical Trials     

Vivli’s CEO, Rebecca Li, will speak on Day 3 at the Global Clinical Trials: Technology & Innovation webcase series. This online event will take place on May 14-16, 2024. Li will participate as a panelist in a discussion session on ‘Harnessing the Potential of Patient-Level data in Clinical Trials.’

Explore the practical benefits of patient-level datasets in clinical trial as industry experts discuss strategies for implementing fully consented patient data and its impact on trial outcomes. The panel will be held on Thursday, May 16th, 5pm CEST / 4pm BST / 11am EDT. Learn more and register here.

Vivli Webinar: The Potential Impact of Recent U.S. Legal Developments on Data Sharing with China and Other Countries of Concern

Vivli held a webinar to discuss recent developments in data privacy laws and their impact on data sharing.

This webinar was held at 5pm CEST / 11am EDT / 8am PDT on Friday, April 12th

VIEW THE RECORDING

Over the past few weeks there have been significant U.S. executive and congressional actions related to restricting transactions, data transfers, and certain types of contracts with China, other countries of concern (e.g., Russia), and individuals and businesses connected with these countries. Principally, this includes President Biden’s Executive Order (“EO”) on bulk sensitive personal data transfers and the corresponding U.S. Department of Justice Advance Notice of Proposed Rulemaking (“ANPRM”), the unanimous passage by the U.S. House of Representatives of the Protecting Americans’ Data from Foreign Adversaries Act, and the passage of the BIOSECURE Act by a critical Senate Committee.

All three of these developments, if finalized, will have important impacts on the sharing of data and biospecimens with China and certain other jurisdictions that have been labeled “countries of concern.” In this presentation, Ropes & Gray partner, David Peloquin, will walk through these different proposed regulations and legislation, focusing on the implications they each may have for research data sharing. He will also discuss the different timelines and comment periods for the EO and ANPRM, as well as the current status of each of the pending pieces of legislation.

Speaker:

  • David Peloquin, Partner, Ropes & Gray

Learning objectives for this session include:

  • Understanding the basics of the EO, the ANPRM, the BIOSECURE Act and the Protecting Americans’ Data from Foreign Adversaries Act
  • Understanding how each of these proposed regulations or pieces of legislation may affect research data sharing with China and other countries of concern
  • Understanding the potential timelines for implementation of each of these proposed regulations and pieces of legislation

VIEW THE RECORDING

Vivli team attends NIH meeting for Data Repositories and Knowledge Bases

Vivli CEO Rebecca Li and COO Julie Wood joined colleagues from across the Generalist Repository Ecosystem Initiative (GREI) at the Data Repositories and Knowledge Bases (DRKB) Program Network Meeting in Rockville, MD on February 28-29.

Participants from the GREI and related programs in the data sharing community met to share knowledge, discuss ongoing and future collaborations, and build connections around shared opportunities and challenges. Sessions at the two-day meeting included presentations on AI- and community-driven data curation and the future of sustainable data resources. Vivli joined with GREI colleagues to present a poster on “Bolstering a sustainable generalist repository ecosystem through coopetition.”

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