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
“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.
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.”
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?
“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.
Welcome remarks
Vivli Update for 2021, Rebecca Li, Executive Director, Vivli
Vivli proposals and their Impact on Scientific Discovery and Patient Care
Funder Policies and Practice in Supporting Data Sharing
Creating Value–Building a Data Sharing Ecosystem
Wrap-up and Next steps
Virtual Networking and informal discussions
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
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.
“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.
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:
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.
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: