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.

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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

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.

Advancing Management of Rheumatoid Arthritis — A conversation with researchers about the impact of their research

Vivli Board Member Dr. Stewart recently connected with researchers Prof. José António P. Da Silva and Dr. Ricardo J.O. Ferreira from the University of Coimbra to discuss the value of clinical trials, data sharing and specifically what we’ve learned about advances in rheumatology.

Dr. Ferreira and Prof. Da Silva used the Vivli platform to request data and recently published, “Revisiting the use of remission criteria for rheumatoid arthritis by excluding patient global assessment: an individual meta-analysis of 5792 patients,” in the Annals of the Rheumatic Diseases.

You can watch the entire conversation here or below:

A case study of data sharing in rare disease

There are more than 7,000 rare diseases and of those 90% are without an FDA-approved treatment. Sharing rare disease data is difficult for a number of reasons, including concerns around protecting patient privacy, control of the data and managing competition, and the possibility for misinterpretation of data. Recently CureDuchenne, Vivli, and the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP), an arm of Critical Path institute, were able to come together in partnership to overcome these challenges to be able to unlock the vast potential of a data set for the rare disease Duchenne muscular dystrophy.

CureDuchenne, a venture philanthropy organization that funds research, early diagnosis and treatment access for Duchenne muscular dystrophy, contributed the Biomarin clinical datasets.

Critical Path Institute – RDCA-DAP, is a neutral, independent data collaboration and analytics hub to promote the sharing of critically important data across rare disease in order to accelerate the understanding of disease progression an optimize clinical trial design. A research team from Critical Path’s Duchenne Regulatory Science Consortium (D-RSC) was seeking additional Duchenne datasets that could be used to validate models for regulatory endorsement.

Vivli is a global data sharing platform that facilitated this instance of data sharing of 4 datasets.

D-RSC submitted plans to regulators and received feedback that the data be validated in an EU-based dataset, because data had largely been based in the US. D-RSC recognized that CureDuchenne had access to 4 trials (adding an additional 364 participants and 2,656 observations to the analysis dataset) based in Europe, being shared on Vivli in a secure manner and reached out to both CureDuchenne and Vivli and were provided access to those data sets, completed validation of their models, and are currently awaiting feedback from regulators.

Each of these organizations played a crucial role in advancing outcomes and patient health for those living with Duchenne muscular dystrophy: Vivli’s partnership made it possible for CureDuchenne to maximize the use of the Biomarin clinical trials held by CureDuchenne by managing the data privacy issues and security that are often so difficult in rare disease data sharing, and providing access to that data in a way that maximizes its usefulness and streamlines the process, which in turn facilitated D-RSC  to efficiently access this clinical trial data and validate their models.

“In the data sharing world, examples of rare disease sharing are also unfortunately ‘rare’. It is our hope that this case study illuminates how when willing partners come together, perceived obstacles can be overcome. We hope this can serve as a model for others in the rare disease space.” says Vivli’s Executive Director, Rebecca Li.