News & Events

Category: News

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.

Researchers who have approved requests for the RFP

The table provides the information of researchers who have accessed the Jaeb Center for Health Research T1D Exercise Dataset via Vivli and indicated that they will be applying for the Helmsley request for proposal.

ResearcherInstitution
Emily FoxStanford University
Dale MorrisonUniversity of Melbourne
Hector Romero UgaldeDiabeloop SA
Marzia CesconUniversity of Houston
Monia RekikUniversité Laval
Boomer OlsenUniversity of Utah
Janet Snell-BergeonUniversity of Colorado
Ali CinarIllinois Institute of Technology
Jenna WiensUniversity of Michigan
Arsalan ShahidCeADAR: Ireland's Centre for Applied AI at University College Dublin
Daniel WestNewcastle University
Ahmad HaidarMcGill University
Temiloluwa PrioleauDartmouth College
Michelle CondrenUniversity of Oklahoma
Joanna DaviesBallad Research Institute
Marie MoulerSchneider Children’s Medical Center of Israel
Marc BretonUniversity of Virginia
Garrett AshYale University
Lisa ChowUniversity of Minnesota
Erin TallonChildren's Mercy Kansas City
Norou DiawaraOld Dominion University
Giacomo CapponUniversity of Padova
Konrad MulrennanAtlantic Technological University
Fabricio GarelliNational University of La Plata
Micaela MorettiniUniversità Poiltecnica delle Marche
Xiaohua Douglas ZhangUniversity of Kentucky
Eleonora Maria AielloUniversity of Trento
Bryan GibsonUniversity of Utah
Roeland MiddelbeekJoslin Diabetes Center
Yao QinUCSB
Thomas HawkeMcMaster University

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.

VIEW THE RECORDING

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

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.

NIH HEAL Initiative® joins Vivli as a member

Vivli welcomes our newest partner platform as a member, the NIH Helping to End Addiction Long-term® Initiative, or NIH HEAL Initiative®, an aggressive, trans-agency effort to speed scientific solutions to stem the national opioid public health crisis.

“We are delighted to include the NIH HEAL Initiative as a member of Vivli,” said Rebecca Li, Vivli Executive Director. “Making these valuable studies available for searching on Vivli is helping to ensure that researchers and the public can find and access them along with the other pain and addiction clinical research data on Vivli. Access of these data will drive scientific discovery, research dissemination and adoption to advance human health.”

Virtually every NIH Institute and Center is accelerating research through the NIH HEAL Initiative to address this public health emergency from all angles. A centerpiece effort to achieving HEAL’s mission is the HEAL Data Ecosystem, which aims to transform research data, findings, and publications into a virtual, annotated, searchable catalog where datasets can be analyzed, compared, and combined.

“HEAL-generated data holds the key to helping patients and communities devastated by the opioid crisis, as well as those seeking relief for unmanaged chronic pain that limits all aspects of life. Vivli offers a valuable tool for researchers in HEAL and beyond to access this rich set of data stored in various repositories that meet security and privacy standards – giving HEAL researchers a great option to leverage their data for new discovery and long-term preservation,” said Rebecca Baker, Ph.D., director of the initiative.

For more information about how the NIH HEAL Initiative supports its investigators to share their data on Vivli, please visit their member page. For additional information about Vivli membership, learn more.

Vivli Executive Director Dr. Rebecca Li Presenting at PHUSE Data Transparency Summer 2022 Event

Vivli’s Executive Director, Dr. Rebecca Li, will be presenting at the PHUSE Data Transparency Summer Event on June 28-30 alongside co-author Rebecca Sudlow, Roche. They will be presenting their abstract titled, “Accelerated sharing of COVID-19 Trial data via the Vivli Global Data Sharing Platform.”

Dr. Li will be speaking at the Wednesday, June 29, session.

Taking place virtually across three days, the Data Transparency Summer Event will run in bitesize sessions from 15:00 to 17:30 GMT (10:00AM to 12:30PM EDT) each day. Attendees can expect to hear thought-provoking presentations, panel discussions and Q&A sessions around each of the day’s topics.