News & Events

Vivli Program Manager Catherine D’Arcy Speaks at DIA Global Clinical Trial Disclosure & Transparency Conference

Vivli’s Program Manager, Catherine D’Arcy, spoke at DIA Global Clinical Trial Disclosure & Transparency Conference on October 18th in Amsterdam, presenting “Clinical Research Data Use: Insights From Vivli’s Experience Of Data Sharing.” More than 140 delegates attended from 16 countries.

The 2022 Global Clinical Trial Disclosure and Data Transparency Conference builds on prior successful conferences to leverage learnings from regulators and international experts in the field. This event will provide essential, timely information about global clinical trial disclosure, data transparency, data sharing for secondary research, and the EU Clinical Trial Information System (CTIS) with the focus on transparency in relation to the protection of personal data and commercially confidential information. It brings leading study sponsors from industry and academia together with regulators and other players to exchange knowledge and share their experiences with the implementation of Clinical Trial Disclosure and Data Transparency from various viewpoints.

Vivli Senior Director Julie Wood Speaks at 19th Annual DIA Japan Annual Meeting 2022

Vivli’s Senior Director, Julie Wood, spoke at the 19th Annual DIA Japan Annual Meeting in Tokyo, Japan on October 11th for “Implementing Data Sharing in a Time of Pandemic.” The panel also included chair Azusa Tsukida, senior advisor to Vivli, and Dr. Oladayo Oyelola, Senior Director of Clinical Trial Information Disclosure at Daiichi Sankyo, Inc.

The theme of the 19th DIA Japan Annual Meeting is “New ‘Quest for the future’- Moving Creativity and Innovation Forward in ‘New Normal.’” Now that the world has experienced COVID-19, all will explore the future in a new normal environment. COVID-19 has brought about dramatic changes in our lives and activities. While face-to-face work declined dramatically, digital transformation accelerated quickly. This also promoted extremely rapid development of vaccines and therapeutic agents, as well as new clinical trial models including telemedicine. In addition, the importance of self-care associated with refraining from visiting medical institutions and the importance of addressing the issue of infodemics were reaffirmed.

NIDDK Central Repository joins Vivli to make its studies more discoverable and further scientific value

Vivli and the National Institute of Diabetes and Digestive and Kidney Disease (NIDDK), part of the National Institutes of Health (NIH), will be working together to broaden exposure and discoverability of NIDDK data. As part of Vilvi’s award to serve as one of six generalist repositories that will work with the NIH Office of Data Science Strategy under its Generalist Repository Ecosystem Initiative (GREI), NIDDK will include NIDDK Central Repository (NIDDK-CR) resources in the Vivli global clinical research data sharing platform.

“We are delighted to include large, multicenter NIDDK-funded studies on our platform as well as support other researchers directly who are funded by NIDDK,” said Rebecca Li, Vivli executive director. “Vivli is excited to partner with NIDDK to aid in the discovery of these valuable data sets and help to maximize research participants’ contributions.”

The NIDDK-CR is a contract-supported and centrally-managed repository that acquires, stores, and distributes resources generated from large, multicenter studies.

“NIDDK-CR’s inclusion within Vivli as part of GREI enhances NIDDK’s repository infrastructure and improves discoverability and reuse of NIDDK-hosted resources,” said Rebecca Rodriguez, Ph.D., NIDDK-CR program director. “It also provides opportunities to the NIDDK scientific community at large who share a common goal of building worthy data ecosystems under FAIR and TRUST principles for data management and digital repositories.”

For more information about the data NIDDK-CR will share on Vivli, please visit their member page. For additional information about Vivli membership, learn more here.

Vivli partners with The Helmsley Charitable Trust to share T1D exercise data

The Leona M. and Harry B. Helmsley Charitable Trust’s Type 1 Diabetes Program announced the launch of their initiative to support novel, real-world solutions to help people with type 1 diabetes exercise safely and to improve their quality of life. Helmsley collaborated with the Jaeb Center for Health Research (JCHR) and a group of investigators to conduct two large observational exercise studies in people with type 1 diabetes (T1D) and is now making the data from the studies publicly available with Vivli. To amplify its impact, Helmsley is also opening a request for proposals (RFP) for researchers, clinicians, and data scientists to analyze the data and test novel solutions in people with T1D.

“Vivli is delighted to facilitate access to these important data sets through a Helmsley grant, and to play a part in the advancement of T1D scientific research,” said Rebecca Li, Vivli Executive Director.

Concept notes for the RFP are due by April 30, 2023, and full proposals will be invited for submission later in 2023. Read Helmsley’s full press release here.

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.

Vivli webinar with CRDSA: “Mind the Data Sharing Gap: Navigating sponsor policies and data protection methodologies.”

Vivli hosted CRDSA to explore findings of their newly published whitepaper, “A Review of BioPharma Sponsor Data Sharing Policies and Protection Methodologies.”

The webinar was held on October 6th, 11am EDT/8am PDT/5pm CEST.


This one-hour webinar featured the authors from the CRDSA’s new white paper “A Review of BioPharma Sponsor Data Sharing Policies and Protection Methodologies” in a lively a moderated discussion with CRDSA’s CEO, Aaron Mann. This webinar explored findings from the white paper that examines sponsor’s data sharing policies and protection methodologies as well as reflections on actionable steps for sponsors and secondary analysis researchers alike.

  • For Researchers: Understand the policy and privacy elements that can impact research utility
  • For Data Contributors: Identify meaningful benchmarks to help guide policy development

Read the whitepaper here!

Speakers include:
Luk Arbuckle, Chief Methodologist, Privacy Analytics (an IQVIA company)
Liz Roberts, Senior Director, Data Policy and Privacy Lead, UCB

Moderated by:
Aaron Mann, CRDSA CEO


Bayer Signs Up as a Member of Vivli

“We are thrilled to welcome Bayer as a member of Vivli,” said Rebecca Li, Vivli Executive Director. “We look forward to supporting researchers to request and analyze Bayer’s data securely.”

As a global leader in healthcare and nutrition, Bayer offers innovative products that support efforts to overcome challenges presented by a growing and aging global population by helping to prevent, alleviate and treat diseases.

“We are very excited to join Vivli and the large global community of leading clinical trial sponsors engaged in data sharing. Vivli offers a great opportunity for Bayer to further strengthen our commitments to transparency and data sharing for our clinical trials”, says Sigrid Achenbach, Head of Clinical Trial Transparency at Bayer.

For more information about the conditions for accessing Bayer anonymized data from completed clinical trials, please visit their member page. For additional information about Membership in Vivli, learn more here.

President Selects former Vivli External Advisory Committee member as National Cancer Institute Director

Vivli enthusiastically congratulates Dr. Monica Bertagnolli on her recent appointment as Director of the National Cancer Institute (NCI).

Dr. Bertagnolli has served as a long-time member on the Vivli External Advisory Committee.

“We are glad to see Dr. Monica Bertagnolli take on such an impactful role and we wish her all the best,” said Rebecca Li, Executive Director.

Biden Selects Harvard Professor as National Cancer Institute Director – The Harvard Crimson

Ipsen joins Vivli to Share its Data

“We are pleased that Ipsen has joined Vivli as a member,” said Rebecca Li, Vivli Executive Director. “By joining Vivli as a member, Ipsen is meeting the PhRMA/EFPIA Principles for Responsible Clinical Trial Data Sharing.”

Ipsen’s vision is to be a leading global mid-size biopharmaceutical company, with a focus on transformative medicines in three key therapeutic areas: oncology, rare disease and neuroscience.

“We at Ipsen are delighted to be joining Vivli to share Ipsen anonymized clinical trial data”, said Heather White, Senior Vice President, Clinical Development Operations R&D at Ipsen. “Responsible data sharing, in accordance with applicable laws and regulations, is essential to accelerate innovation and drive positive impact for patients whilst safeguarding patient data.”

For more information about the conditions for accessing Ipsen’s data, please visit their member page. For additional information about Membership in Vivli, learn more here.

Vivli Executive Director Dr. Rebecca Li Speaking at 2022 Biomedical Transparency Summit

Vivli’s Executive Director, Dr. Rebecca Li, will be speaking at the Center for Biomedical Research Transparency’s 2022 Biomedical Transparency Summit on September 7th for “NIH Data Sharing Policy  – What you need to know!” Dr. Li will speak alongside NIH’s Active Director of the Office of Science Policy, Dr. Lyric Jorgenson and NIH’s Associate Director for Data Science, Dr. Susan K. Gregurick.

Dr. Li will be speaking at the Wednesday, September 7, session. Register today.

The 2022 Biomedical Transparency Summit is a virtual program of 2 webinars that brings together leaders in publishing, private and publicly funded research, policymakers and technology to share the latest transparency developments impacting research practice.

Webinar 1 will take place Wednesday, September 7 at 3pm EDT/NY, 8pm BST/London. Webinar 2 will take place Wednesday, September 14 at 3pm EDT/NY, 8pm BST/London. Attendees can expect to hear thought-provoking presentations, panel discussions and Q&A sessions around each of the day’s topics. Learn more information here.