News & Events

Category: Blog

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.

Vivli names remaining 9 Global Data Sharing Innovator Award Winners

In 2018, Vivli launched its first data analysis challenges to encourage researchers to search and request studies available on the Vivli platform. Since then, we have had received more than 250 requests.

Early last year, Vivli was excited to name ten Pioneer Winners – the first lead investigators whose data requests were successfully approved—and its first Global Data Sharing Innovator. We are excited to announce today our final nine Global Data Sharing Innovators.

Global Data Sharing Innovators are the first ten data requests that complete and publish their analysis in a peer-reviewed journal. Lead investigators of the data request team are recognized with this award and the opportunity to present the results of their research at a future global Vivli Data Sharing meeting.

 

The winners and their affiliated institution at the time of publication are:

Ahmad Abuhelwa, University of South Australia

Maria Alice Franzoi, Jules Bordet Institut

Chris Gale, University of Leeds

Laure Gossec, Sorbonne Université

Akira Kimata, University of Tsukuba

Thomas Metkus, Johns Hopkins University School of Medicine

José António Pereira da Silva, Universidade de Coimbra, Portugal

Sharon Straus, St. Michael’s Hospital

Michael Szarek, SUNY Downstate Medical Center

 

View a summary of publications made as a result of research requests made on the Vivli platform.

Vivli waives data contribution fees for researchers located in low-and-middle-income countries

 

Vivli has waived fees associated with data contributions from academic researchers located in low-and-middle-income countries.

“We decided to waive these fees as it was important to remove financial barriers to data sharing,” said Rebecca Li, Executive Director of Vivli.

Learn more about the process in How to Share Data. For researchers that have any questions, please contact Vivli directly by emailing support@vivli.org

Vivli Co-founder Dr. Ida Sim to speak at CBMRT’s Transparency Summit Series

Center for Biomedical Research Transparency (CBMRT) is hosting its fourth annual global summit series with the intention to engage a diverse group of participants with a passion for increasing transparency in research practices. CBMRT will host a virtual Summit series with short sessions scheduled for February 26, March 16 and March 26.

Participants can expect a very engaged discussion on topics including research integrity, global open access policy developments, and transparency implications of research acceleration. Presentations will be deliberately brief (but content rich) to allow ample time for productive discussions to ensue.

Training videos for researchers available on YouTube

Vivli is delighted to launch the first in a series of training videos aimed at researchers interested in accessing individual participant level data (IPD).

These short and informative data sharing videos can help a first-time requester of data or a more experienced secondary analysis researcher. Topics include:

• What is typically provided in the data package? How do these documents inter-relate?
• Why are data anonymized prior to sharing and how might this affect my analysis?
• Case examples of where key information may be located in the relevant data documents

For additional ideas for our next series of training videos contact:
Info@vivli.org

If you are interested in starting a search for individual participant level data from clinical trials please see www.vivliorg.kinsta.cloud

These videos are open for use by the data sharing community. Please share them widely.

What are the Supporting Documents Provided Along with the IPD?

Why is the Data Anonymized/De-Identified Prior to Sharing?

What is a Clinical Study Report (CSR)?

Vivli Executive Director Rebecca Li to Present at PHUSE Data Transparency Winter Meeting

Vivli Executive Director, Rebecca Li, will join Critical Path Institute’s Jane Larkindale and Debra Miller from CureDuchenne for a session on Data Sharing of Rare Disease Data – Challenges and Rewards at the PHUSE Data Transparency Winter Meeting.

This live presentation can be viewed on Tuesday 19th January 2021 between 15:00–17:30 GMT (10:00 am – 12:30 pm EST). Attendees will have the opportunity to listen to three live presentations, and then participate in a joint panel discussion/Q&A session based on the content from the day.

Vivli’s Dr. Ida Sim to lead dkNET webinar entitled “Vivli: A Global Clinical Trials Data Sharing Platform”

Vivli Co-Founder Dr. Ida Sim will lead a dkNET webinar entitled “Vivli: A Global Clinical Trials Data Sharing Platform”. dkNET is a search portal that helps researchers find research resources relevant to their research and keep up to date on new tools, services and mandates to support robust and reproducible science. In this webinar, Dr. Sim will explore questions such as why organizations should share completed clinical trial data, how Vivli can help organizations share their clinical trial data, and what the process is to request data from completed studies.

View the Recording of Vivli’s 2020 Annual Meeting

“Vivli Global Researchers and Key Stakeholders – Creating Impact”

On November 10th, we gathered for a lively discussion as part of our 2020 Annual Meeting. The meeting created a dialogue between researchers and data contributors about data sharing and what can be done to further increase scientific knowledge in future.

VIEW THE RECORDING

Agenda

Welcome remarks

Vivli Update for 2020, Rebecca Li, Executive Director, Vivli

Panel: The Vivli Project Experience

  • Moderator: Marcia Levenstein, ScD, MBE, Vivli
  • John Frew, MD, Rockefeller University – First Vivli Global Data Sharing Innovator Winner
  • Areti Angeliki Veroniki, MSc, PhD, Senior Research Fellow, University of Ioannina – Member of Vivli Pioneer Award winning team
  • Jane Larkindale, DPhil, Executive Director, Rare Disease Cures Accelerator, Critical Path Institute

Panel Discussion: Cross-Platform Sharing

  • Moderator: Ida Sim, MD, PhD, Vivli, UCSF
  • Vivek Rudrapatna, MD, PhD, UCSF – Vivli Pioneer Award Winner
  • Karla Childers, Senior Director, MSJ, Strategic Projects, Johnson & Johnson
  • Liz Roberts, MSc, Senior Director, Strategic Data Opportunities Policy Lead, UCB

Invited Speakers: Data Sharing During a Time of Public Health Emergency

  • Georgina Humphreys, PhD, Clinical Data Sharing Manager, Wellcome Trust
  • Steve Kern, PhD, Deputy Director, Quantitative Sciences at Bill & Melinda Gates Foundation

Wrap-up and Next steps

  • Rebecca Li, Executive Director, Vivli
  • Michael Stebbins, PhD, Vivli Board Chair, President of Science Advisors