News & Events

Category: News

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.

 

 

Vivli study published in Contemporary Clinical Trials

Eighteen months into the COVID-19 pandemic, the Vivli team, led by Executive Director, Rebecca Li, were among the authors of a paper that analyzed data sharing intentions among trials registered through clinicaltrials.gov. The team found that positive intentionality to share IPD remained static at 15% in this much larger sample size of 2,759 relevant trials (COVID interventional trials).

However, a comparison of declared intention to share IPD in data sharing statements at the time of publication revealed a noticeable shift: affirmative intentions grew from 21.4% to 57%. Within the subset of studies published within journals affiliated with the International Committee of Medical Journal Editors (ICMJE), positive sharing intentions were even higher as indicated in data sharing statements (65%).

Vivli Senior Advisor Marcia Levenstein to take the stage at 10th Annual Chief Medical Officer Summit 360º

The 10th annual Chief Medical Office Summit 360º seeks to address the unique challenges associated with directing and managing R&D functions with limited resources, while raising capital and strategizing for growth and appropriate exits. Held on April 4-5, 2022, they will be featuring Vivli’s Senior Advisor, Marcia Levenstein in their featured session, “What Statisticians wish they could tell their CMOs.”

As a panelist, Marcia will share insights on what CMOs need to know about statistics, avoiding common mistakes, strategies for clinical development, the strengths and weaknesses of complex trial designs like Bayesian, and how to maximize the use of statisticians.

Sanofi joins Vivli, a platform for researchers to request its anonymized data and study documents from completed clinical trials

“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.

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: