“We are delighted that Sanofi is joining as a Vivli member and making it possible for researchers to request access to anonymized data and accompanying documents from their completed clinical trials,” said Rebecca Li, Vivli Executive Director.
Sanofi is an innovative global healthcare company, driven by one purpose: we chase the miracles of science to improve people’s lives.
For more information about the conditions for accessing Sanofi data, please visit their member page. For additional information about Membership in Vivli, learn more here.
Category: News
Vivli receives award to work with NIH to enhance data sharing
Vivli is part of a collaborative effort to improve access and discoverability of NIH-funded data
January 26, 2022—Today Vivli has been named one of six generalist repositories that will work with the NIH Office of Data Science Strategy (ODSS) as part of the Generalist Repository Ecosystem Initiative (GREI). This initiative will enable better access to and discovery of NIH-funded data among generalist repositories and aims to supplement the domain-specific data repositories that are critical components of the NIH biomedical data ecosystem for data sharing.
“Vivli is delighted to be working with the NIH to ensure that the clinical research funded by the NIH is as discoverable and accessible as possible,” said Rebecca Li, Phd, Vivli Executive Director, co-PI on this award. “We look forward to supporting NIH-funded researchers to support their data sharing efforts. With key partnerships in place to improve the data sharing ecosystem, we have a tremendous opportunity to advance science.”
These repositories will work together to address and implement a common set of capabilities that comply with desirable repository characteristics (NOT-OD-21-016), establish metrics to optimally measure usage and impact, develop use cases for data sharing, and train and educate researchers on FAIR data and the importance of data sharing. This initiative also aims to improve discoverability of data within and across participating generalist repositories and accelerate reproducibility and reuse of data.
“This award opens up opportunities to leverage our unique expertise in the clinical research space and establish a functioning data sharing ecosystem for NIH researchers alongside other generalist repositories”, said Ida Sim, MD, Phd, Professor of Medicine, UCSF, co-founder of Vivli and a Co-PI on this award.
Other than Vivli, GREI includes 5 additional established generalist repositories:
• Dryad
• Dataverse
• Figshare
• Mendeley Data
• Open Science Framework
More information can be found on the NIH website
Vivli featured as a case study about data sharing in special collection
Vivli showcased in new NAM Special Publication
Vivli is featured in a new Special Publication from the National Academy of Medicine, Sharing Health Data: The Why, the Will, and the Way Forward, which features novel data sharing collaborations born out of the pandemic.
The experiences of Vivli are featured to show how data sharing can be accomplished and how barriers can be overcome.
The founders of Vivli recognized that sharing health data was vital to the future of population health, and started the non-profit with a vision of making data sharing widely accessible. The importance of these principals has never been highlighted more than during the global COVID-19 pandemic.
“Rapid data sharing is both an imperative and reality in the age of the COVID-19 pandemic,” Rebecca Li, Vivli Executive Director.
Download the special publication and associated resources: www.nam.edu/SharingHealthData
Vivli 2021 Progress Report Published
We are delighted to share with you Vivli’s 2021 Progress Report, which highlights our milestones to date and plans for the year ahead.
We look forward to continuing to grow together in 2022 and beyond, as leaders in data sharing and transparency, working together towards our end goal of advancing human health.
Vivli Senior Director Julie Wood to Speak at Future-Proof Your Clinical Data Disclosure, Transparency and Plain Language Summaries Event
Clinical Trials- Informa Connect is hosting a hybrid event, “Future-Proof Your Clinical Data Disclosure, Transparency and Plain Language Summaries,” in June 2022. They will be featuring Vivli’s Senior Director, Julie Wood, in their series on Data Sharing Challenges in the presentation, “CASE STUDY: Sharing of Covid-19 Trials on Data Sharing Platforms.”
- Julie Wood – Director of Strategy and Operations, Vivli
- Julie G. Holtzople – Head of Clinical Transparency and Data Sharing, AstraZeneca
The presentation will focus on the challenges, opportunities and key learnings from the use of data sharing platforms; and progress and developments for multi-sponsor platform for sponsors and researchers. She will also answer the question: As data sharing becomes the norm, what should a sponsor consider when deciding on how to securely share clinical data?
Interviews with researchers about the impact of their secondary analysis
Vivli board members interviewed with researchers who submitted data requests using the Vivli platform to discuss the importance of their findings, but also the value of clinical trials and data sharing as a whole. A compilation of these videos can be found below:
Management of rheumatoid arthritis — A conversation with José António P. Da Silva and Dr. Ricardo J.O. Ferreira
Vivli Board Member Dr. Murray Stewart 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.
Watch the entire conversation:
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 interviewed Dr. Neeraj Narula from McMaster University to discuss the value of clinical trials, data sharing, and what his team learned about advances in the treatment of Crohn’s disease.
Dr. Narula 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.
Watch the entire conversation:
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:
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.
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.