Join us to find solutions to problems in data privacy and rare disease clinical data sharing and network with tech and medical leaders in the field

Datathon in Boston; free attendance; monetary prizes

WHAT: Microsoft and Vivli, a clinical trial data sharing platform, are joining forces for a one-day datathon in Boston on data privacy and rare disease clinical trial sharing. Rare disease clinical trials often have just a few participants and protecting their privacy and their data is paramount.  But many individuals with rare diseases and their families are eager to have their data shared in order to make progress on their disease and save lives.  How do we solve this?

The problem statement: How can teams safeguard participant privacy and minimize privacy loss while maintaining the scientific analytic value of the data, for smaller data sets or rare disease data set that are more highly identifiable?

WHEN: June 21, Boston’s District Hall, from 10:30 am to 7 pm.  Meals provided!

WHY: This is a great opportunity to network with leaders in this field from Microsoft representatives to leading scientists in the field. Prior experience is not a requirement, attendance is free, and monetary prizes for the top winning solutions chosen by judges.

PRIZES

The Global Microsoft-Vivli Datathon prize will go to members from the winning team with the highest score. They will receive $1,500 and an invitation and travel expenses paid (up to $1,500 for two team members) to Vivli’s Annual Meeting in Washington, DC. The team will be invited to present their solution to stakeholders in the data sharing community (non-profit foundations, pharmaceutical industry and leading academic institutions). Additional prizes:

$500: Most Innovative Solution

$200: Most Outstanding Graduate Submission—submission from a team comprised of a majority of graduate students

$200: Most Outstanding Undergraduate Submission — submission from a team comprised of a majority of undergraduate students

Outstanding Remote submission — A select group of remote, international participants will be admitted, but are not eligible for the other prizes

Read the FAQs for more information about the event, including ideas that could be included in your team’s submission to the innovation challenge.

WHO: Individuals or teams from all backgrounds, skills, genders, and geographies are welcome. We accept a wide range of applicants, from beginners, to experienced veterans of innovation challenges. Invited are all experts and leaders in data analytics, data science, technology, clinical research, patient advocacy, data privacy and statistics.

Rules

Agenda 

FAQs

Sponsors 

Questions? support@vivli.org

 

 

Informed Consent and Data Sharing – a community discussion from

Vivli is pleased to provide a recording of our latest presentation, a discussion with leading experts in informed consent and data sharing. This conversation, recorded live February 13, 2019, featured Vivli Executive Director Rebecca Li, Dr. Barbara Bierer, Faculty Director of the MRCT Center, David Peloquin, Associate at Ropes & Gray, and Dr. Stephen Rosenfeld, SACHRP Committee Chair, discussing informed consent and data sharing.  

Watch Now

Topics include: 

• Prospectively what makes broad consent sufficient? What are the limits? 
• Retrospectively what elements preclude consent? 
• ICF template language for data sharing 
• GDPR / other international regulations and informed consent 

Presenter bios: 

Dr. Barbara Bierer 

Faculty Director, MRCT Center   

Dr. Rebecca Li 

Executive Director, Vivli  

Mr. David Peloquin 

Associate, Ropes and Gray 

Dr. Stephen Rosenfeld 

IRB/REB Chair, Quorum; Chair, SACHRP 

 

 

 

 

 

 

 

Today is International Clinical Trials’ Day in recognition of this same date in 1747 when James Lind is believed to have begun the first known controlled trial, comparing different treatments for scurvy which was common among sailors in the British Royal Navy.

“As an organization, Vivli honors all those who have come before us in advancing science. We look forward to working together with the international health research community to lower the barriers to sharing of clinical research data,” said Rebecca Li, Vivli Executive Director. “Vivli looks forward to playing its part in the scientific endeavor when our platform is fully operational this July 19 to make it easier to share and combine data, which will help ensure we are making the most of the contributions made by clinical trial participants.”

International Clinical Trials’ Day seeks to raise awareness of the importance of research to health care and draw attention to ways in which the research can become more relevant to practice.

Vivli’s powerful search engine allows users to preview search functionality prior to launch in July

Cambridge, Mass.–Vivli opened up the beta version of its novel global platform for sharing clinical trials today. Researchers and other users can go to app.vivliorg.kinsta.cloud, try out the search functionality and provide feedback to Vivli about enhancements they would like to see before the formal launch in July.

During the beta test period, the public will have access to the search tool on the platform, and while the process to request data and other functionality will be rolled out with the full release at launch, users can provide valuable feedback to the development team on the core search functionality and interface of the platform. Vivli’s full launch is scheduled for July 19, 2018, at the National Academy of Sciences in Washington, D.C.

“Vivli’s intuitive search interface allows users to refine their search and only request the studies that they need to answer important research questions,” said Dr. Ida Sim, Vivli’s Technical Lead. “This will hopefully accelerate the research process to drive forward scientific discovery.”

Vivli will offer the research community the opportunity to store, request and analyze anonymized clinical trial data in a secure research environment, with built in protections for data security and privacy.

Vivli is grateful to the support of the following organizations for supporting the development of the Vivli platform and allowing the studies associated with their organizations to be included in the public beta test of the search function. These leaders in data sharing and transparency include: Critical Path Institute, GlaxoSmithKline, ImmPort (a data-sharing platform funded by the National Institutes of Health), Johnson & Johnson, Pfizer, Project Data Sphere LLC, and Takeda.

“Critical Path Institute (C-Path) is pleased to participate in the Vivli Beta project. C-Path is committed to supporting efforts such as this to leverage and share as much information as possible to more fully understand disease characteristics, and ultimately benefit those living with disease,” Martha Brumfield, Critical Path Institute CEO.

“We believe that data transparency can promote scientific innovation and ultimately improve patient care,” said Kate Knobil, GSK’s Chief Medical Officer. “We continue to collaborate in the quest for the best ways to increase access to this vital information. That’s one reason we are contributing studies to the beta test of the Vivli search function while continuing to support the Clinical Study Data Request online site, where we make more than 2,000 of our studies available for data sharing.”

“Johnson & Johnson believes in the importance of data sharing, as is evidenced through our continued engagement with the YODA Project. We believe that the goal of data sharing—advancing science and medicine for the benefit of patients–will only fully be realized when all stakeholders who generate clinical data participate.  We hope that new platforms, such as that being created by Vivli, will lead to a broadening of engagement by other stakeholders in the R&D ecosystem,” said Joanne Waldstreicher, M.D., Chief Medical Officer, Johnson & Johnson.

“Pfizer has had a longstanding commitment to ensure that data are available to those who need them, including researchers, trial participants, regulators, and others acting in the best interest of patients,” said Freda Lewis-Hall, M.D., Executive Vice President and Chief Medical Officer, Pfizer. “We are proud to have participated in the development of the Vivli platform and look forward to learnings from the beta testing period, to help demonstrate how Vivli’s approach may promote effective and ethical collaborations, build trust throughout the health care system, and enable monitoring of the progress being made to address unmet medical needs.”

“Giving researchers the ability to easily find clinical trial patient-level data spread across different data sharing platforms will enable them to more comprehensively investigate how to improve patient outcomes,” said Bill Louv, President for Project Data Sphere, LLC. “In working with Vivli and the other stakeholders, we’re excited to be extending the value of the cancer trial data we continue to aggregate.”

“Takeda is strongly committed to our core value of integrity and an important way to demonstrate this commitment is through maximizing the transparency of our clinical research,” said Patrick Cullinan, Head of Clinical Transparency at Takeda Pharmaceuticals. “As such, Takeda has been a leader in the field of patient-level data sharing and has been proud to support the development of the Vivli platform from its inception through the current beta testing. Takeda sees enormous potential in Vivli’s vision to create a more connected and interoperable data sharing research environment to facilitate additional innovative science that maximizes use of existing clinical trial data. Takeda believe this responsible reuse of our patient’s data further honors and respects trial participant’s contribution to research, while also supporting the research community by facilitating discovery and responsible access to data.”

 

-ends-

 

Media Contacts:

 

Vivli, Julie Wood jwood@vivli.org 1(573)514-3305

GlaxoSmithKline, Mary A. Rhyne, mary.a.rhyne@gsk.com, mobile: 919-412-9089 .

Johnson & Johnson, Kim Fox, KFox13@its.jnj.com, Mobile: (862) 212-2409

 

About Vivli

Vivli is a non-profit organization that is establishing a global data-sharing and analytics platform to serve all elements of the international research community. We act as a neutral broker between data contributor and data user and the wider data sharing community. Vivli is establishing an independent data repository, in-depth search engine and a cloud-based analytics platform. We are working to provide the platform as well as harmonize the governance, policy and processes to make sharing data easier. The ultimate aim of Vivli is to advance human health from the insights and discoveries gained by sharing and analyzing clinical research data.