News & Events

View the Recording of Vivli’s 2021 Annual Meeting

“Creating Value by Working Together”

Vivli’s 2021 Annual Meeting was held on November 3rd. This meeting served as a chance to allow researchers, data contributors, and funders to discuss data sharing and its importance for furthering scientific discoveries.

View the Recording

View the Presentation

Agenda

Welcome remarks

Vivli Update for 2021, Rebecca Li, Executive Director, Vivli

Vivli proposals and their Impact on Scientific Discovery and Patient Care

  • Moderator, Murray Stewart, Vivli board member
  • Ricardo J.O. Ferreira, University of Coimbra
  • J.R. Meloro, Pfizer
  • Katherine Tucker, Roche

Funder Policies and Practice in Supporting Data Sharing

  • Moderator: Barbara Bierer, Multi-Regional Clinical Trials Center and Vivli co-founder
  • Ishwar Chandramouliswaran, NIH
  • Scott Kahn, Helmsley Charitable Trust
  • Thea Norman, Gates Foundation
  • Vasee Moorthy, World Health Organization
  • Yo Yehudi, Wellcome Trust

Creating Value–Building a Data Sharing Ecosystem

  • Moderator: Steve Kern, Gates Foundation
  • Philippe Guérin, IDDO
  • Rebecca Li, Vivli
  • Tetsuyuki Maruyama, ADDI
  • Andrew Morris, HDRUK

Wrap-up and Next steps

  • Rebecca Li, Executive Director, Vivli

Virtual Networking and informal discussions

 

Leaders in Health Research Data Sharing Announce Partnership to Drive Insights in Alzheimer’s disease

A new partnership between the Alzheimer’s Disease Data Initiative (ADDI) and Vivli expands access to critical clinical trial data from leading pharmaceutical companies.

Today, the Alzheimer’s Disease Data Initiative (ADDI) and Vivli – two leading health data organizations – announced a new partnership. It is aimed at expanding access and interoperability of data from completed clinical trials related to finding new treatments and cures for Alzheimer’s disease and related dementias. The new partnership enables researchers worldwide to request datasets from leading global pharmaceutical companies Eli Lilly (Lilly) and GlaxoSmithKline (GSK) through the Vivli platform and analyze it in ADDI’s data sharing platform – the AD Workbench.  This partnership will provide researchers with high quality data from a range of sources that can be interrogated and analyzed all together for the first time. The end goal is that these novel analyses may lead to new insights into this devastating disease.

“There is still so much we need to learn about Alzheimer’s disease and related dementias, and widely accessible, high-quality data from clinical trials will be a critical part of the solution” said Tetsu Maruyama, Executive Director of ADDI. “Through this partnership with Vivli, we’re excited to make clinical trial data available in the AD Workbench. This allows researchers around the globe and across disciplines to use these data to generate and test important new hypotheses. We look forward to growing this partnership in the months ahead.”

Lilly and GSK are making an important contribution to Alzheimer’s and dementia by allowing their data to be combined with data on ADDI,” said Rebecca Li, Vivli Executive Director. “We are optimistic that the ability to combine these datasets with those on an Alzheimer’s and dementia-focused platform will hopefully move us closer to real-world insights for these devastating diseases.”

The AD Workbench is a global platform that focuses on collaboration and data sharing – to accelerate discoveries and innovations in Alzheimer’s disease and related dementias. Vivli is the world’s largest clinical research data sharing platform and shares data, including Alzheimer’s disease, from more than 6,000 completed trials. Both ADDI and Vivli provide a secure way for researchers from around the globe to request, access and analyze data.

“Harnessing more than three decades of research into Alzheimer’s disease, we have made significant progress in understanding the disease pathology of Alzheimer’s and pioneering diagnostics and therapeutics to potentially modify disease progression,” said Anne E. White, senior vice president and president, Lilly Neuroscience, Eli Lilly and Company. “We are excited to partner with ADDI and Vivli to enhance Alzheimer’s research and hope that this initiative will further understanding and action to help people with this disease.”

To learn more about ADDI and the AD Workbench, please visit www.alzheimersdata.org.

To learn more about Vivli, please visit www.vivli.org.

***

Alzheimer’s Disease Data Initiative (ADDI), a 501 (c)(3) medical research organization (MRO) in partnership with the University of Washington, is dedicated to advancing scientific breakthroughs in the treatment of Alzheimer’s disease and related dementias. ADDI aims to increase interoperability of existing data platforms globally, increase sharing of dementia-related data from academic and industry sources, and empower scientists to find, search, combine, and analyze data that could lead to new discoveries in dementia research. ADDI also aims to enhance or fill gaps in datasets, including enabling the generation of more demographically representative datasets. LinkedIn: AlzheimersData Twitter: AlzData. For further information, contact Shirley Prasad, email: shirley.prasad@alzheimersdata.org.

About Vivli

Vivli is a non-profit organization working to advance human health through the insights and discoveries gained by sharing and analyzing data. It is home to an independent global data-sharing and analytics platform which serves all elements of the international research community. The platform includes a data repository, in-depth search engine and cloud-based analytics, and harmonizes governance, policy and processes to make sharing data easier. Vivli acts as a neutral broker between data contributor and data user and the wider data sharing community. For more information, visit www.vivli.org and follow us on Twitter @VivliCenter. For further information, contact; Julie Wood, Director of Strategy and Operations, email: jwood@vivli.org tel: 0015735143305

IDDO to make COVID-19 studies discoverable on the Vivli platform

Vivli extends a warm welcome to our newest partner platform as a member, the Infectious Diseases Data Observatory (IDDO).

“We are pleased IDDO is making their studies findable on the Vivli platform,” said Rebecca Li, Vivli Executive Director. “We all want to do everything we can to make sure this valuable data is available to as many researchers as possible to continue to advance knowledge about COVID-19.”

IDDO is a scientifically independent, multi-disciplinary coalition of the global infectious disease community focused on data re-use and committed to ensuring that its infrastructure and systems boosts the Findability, Accessibility, Interoperability, and Re-use (FAIR) of data. IDDO has played a key role during the COVID-19 pandemic as an international, interoperable data platform, enabling researchers to provide rapid insight into disease pathogenesis and treatment.

“During the global COVID-19 pandemic, the re-use of dispersed data from multiple countries has been a critical tool for generating evidence and guiding policy,” said Professor Philippe Guérin, Director of IDDO. “We are delighted to be teaming up with Vivli today as together we can make datasets more easily findable and accessible to inform future research and development efforts.”

Infectious diseases disproportionately impact low- and middle- income countries (LMICs). IDDO’s scientific collaborations ensure that the communities most affected are central to the equitable and sustainable development of better treatment and control of infectious diseases, translating data into evidence that improves outcomes for patients worldwide.

For more information about how IDDO shares its data on Vivli, please visit their member page. For additional information about Vivli membership, learn more here.

Shionogi joins Vivli to share its data

“We are delighted to welcome Shionogi as our newest member,” said Rebecca Li, Vivli Executive Director. “We are excited to facilitate Shionogi’s continued commitment to clinical trial data transparency.”

The purpose of the Shionogi Group’s corporate activities is, as expressed in the opening of “The Company Policy of Shionogi”, to “supply the best possible medicine to protect the health and wellbeing of the patients we serve.” This eternal and unwavering corporate philosophy is our foundation which supports us and what we should achieve globally. To achieve and live by the Company Policy, we have formulated “Shionogi Group Code of Conduct”. Through activities based on “The Company Policy of Shionogi” and “Shionogi Group Code of Conduct”, Shionogi will continue to contribute to patients, physicians and other healthcare providers, shareholders and investors, and furthermore to society as a whole.

Shionogi believes that disclosure of appropriate information of clinical trials contributes to advancing scientific progress and improving public health, and ultimately helps patients and healthcare providers make informed clinical decisions.

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

Vivli releases major update of the platform

Version 2.0 of the Vivli platform has been released and is available to users.

“The improvements to the underlying infrastructure of Vivli should have major benefits to our users,” said Julie Wood, Vivli Director of Strategy and Operations. “We have updated Vivli to take advantage of many of the newer benefits of Microsoft Azure, including the option for users to have larger, more optimized research environments as well as the ability to process and analyze up to 1T of data.”

The release includes several new features:

  • In the research environment, ability to process and analyze much larger data files (up to 1T of data)
  • Option for researchers to choose for larger, optimized research environments to conduct their analysis
  • Ability for researchers to add R packages from CRAN not already included as standard
  • Updated suite of tools and software as standard in the research environment
  • Metadata available about Vivli studies in Google Dataset Search
  • Ability for supporting documents to be made available to researchers searching for studies

d-wise and Vivli Announce Partnership to Offer Anonymization Services and Software for Institutions and Researchers Contributing to Clinical Research Data Sharing

Leading Life Science IT services and software provider, d-wise, an Instem Company, and Vivli are pleased to announce a partnership aimed at providing easily accessible anonymization services and software to leading institutions (biopharmaceutical companies, academic institutions of higher learning) as well as individual researchers planning to share clinical research data on Vivli’s global data sharing platform.

Vivli, is an independent, non-profit organization focused on sharing individual participant-level data from completed clinical trials to serve the international research community. Their platform enables global collaboration and access to data to accelerate scientific insights. Data contributors wishing to share clinical trial data have a responsibility to ensure that trial participants cannot be personally identified. Depending on the size and bandwidth of the organization sharing the data, they may not have a standard method or process for data anonymization in place.

“There are several reasons why sharing clinical research data is important, from global collaboration to moral obligations,” shared Kristin McDougall, Director of Transparency at d-wise. “The go-to partner for many of our clients who proactively share their data is Vivli. d-wise is thrilled to expand into a direct partnership with Vivli so our anonymization software and services can be adopted by a broad, diverse community of stakeholders with a shared goal of advancing human health through the insights and discoveries gained by sharing and analyzing data.”

“We are delighted to partner with d-wise and have them become part of our data sharing community,” said Rebecca Li, Vivli Executive Director. “We believe that together we make it easier for the entire data sharing community to securely share the data from completed clinical trials to advance human health and gain new insights for scientific discovery.”

d-wise offers outsourced anonymization services utilizing industry-leading anonymization software, Blur, allowing sponsors to overcome this hurdle and responsibly share trial data on the Vivli platform while protecting patient data and retaining as much data utility as possible. This empowers pharmaceutical companies to share on a global scale without impacting internal workflows.

This partnership permits both d-wise and Vivli to continue working toward a shared mission to accelerate improvements in human health and wellbeing.

For more information, visit our websites.

d-wise.com

vivli.org

Vivli Executive Director Dr. Rebecca Li to speak at Ropes & Gray and Mass Insight Global Partnerships – a Data Science Webinar

Ropes & Gray and Mass Insight Global Partnerships will be featuring Vivli’s Executive Director, Dr. Rebecca Li, on their upcoming webinar, “Accelerating Next Generation Developments in Cancer Care: A Collaborative Agenda for Data Innovations and Policy.”

Ropes & Gray and Mass Insight Global Partnerships aim to highlight the impact data sharing has on scientific developments, specifically oncology clinical trial recruitment. The webinar will provide valuable insight into the role of data innovations on clinical research and cancer care.

This webinar will take place Wednesday, September 22 12:00-1:30 pm (4:00-5:30 pm GMT).

To learn more about Dr. Li’s presentation and RSVP for the event reach out to RGEvents@ropesgray.com.

Breast cancer research and data sharing – an interview with Dr. Ashley Hopkins

Vivli board member and Duke University Professor, Eric Perakslis, met with Dr. Ashley Hopkins of Flinders University to discuss the importance of his team’s research to help provide information to breast cancer patients and their doctors as to how they may react to certain medications.

Dr. Hopkins has used the Vivli platform to request data for research questions and recently published “Prediction of severe neutropenia and diarrhoea in breast cancer patients treated with abemaciclib,” in Elsevier.

You can watch the entire conversation here or below.

Advancing the treatment of Crohn’s Disease through data sharing— An interview with Dr. Neeraj Narula

Vivli co-founder and UCSF professor Dr. Ida Sim had the opportunity to interview Dr. Neeraj Narula from McMaster University to discuss the value of clinical trials, data sharing, and what we’ve learned about advances in the treatment of Crohn’s Disease.

Dr. Narula has used the Vivli platform to request data for a number of research questions and recently published, “Predicting endoscopic remission in Crohn’s disease by the modified multiplier SES-CD (MM-SES-CD),” in Gut.

You can watch the entire conversation here or below:

NIAID to list its studies on the Vivli platform

Vivli extends a warm welcome to our newest partner platform as a member, the NIAID Clinical Trials Data Repository, AccessClinicalData@NIAID.

“We are delighted to include AccessClinicalData@NIAID studies on the Vivli platform,” said Rebecca Li, Vivli Executive Director. “By making these valuable studies available for searching on Vivli, AccessClinicalData@NIAID is helping to ensure that researchers can find and access these important studies. It will help drive scientific discovery through data sharing to advance human health.”

NIAID Clinical Trials Data Repository, AccessClinicalData@NIAID, is an NIAID cloud-based, secure data platform that enables sharing of and access to anonymized individual, patient level clinical data sets from NIAID sponsored clinical trials to harness the power of data to generate new knowledge to understand, treat, and prevent COVID-19 and other infectious diseases.

For more information about how AccessClinicalData@NIAID shares its data on Vivli, please visit their member page. For additional information about Vivli membership, learn more here.