Challenges and a Way Forward in Sharing Clinical Trial Data: A Workshop on November 18-19, 2019

Vivli Executive Director, Rebecca Li, will speak about the Vivli platform on the first day and Vivli founder and technical lead, Ida Sim, will moderate a session on the second day about Overcoming Usability and Sustainability Challenges.

The workshop will explore challenges, and opportunities in clinical trial data sharing efforts since the release of the 2015 Institute of Medicine report Sharing Clinical Trial Data: Maximizing Benefits, Minimizing Risk.

WORKSHOP SPEAKERS WILL:

• Consider the value and the potential risks/costs of sharing clinical trial data for key stakeholders, including clinical trialists, sponsors, primary and secondary researchers, and patients;
• Review the current landscape of clinical trial data sharing and reuse across public and private sectors (e.g., policies, platforms, collaborations, data sharing culture, published research output);
• Examine use cases and trends from across public and private sectors when it comes to success, failure, lessons learned, and value;
• Consider the perspectives and expectations of primary and secondary researchers, clinical trial participants, patient organizations, research sponsors (pharmaceutical companies and nonprofit organizations), journals, institutions, and federal agencies; and
• Discuss next step opportunities for stakeholders to better harmonize incentives, policy, data standards, and governance to encourage the sharing and reuse of clinical trial data.

This workshop is co-sponsored by the Wellcome Trust and convened under the auspices of the National Academies Forum on Drug Discovery, Development, and Translation; the Forum on Neuroscience and Nervous System Disorders; the National Cancer Policy Forum; and the Roundtable on Genomics and Precision Health.

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