February 13,2025

Data Governance Committee Meeting

2/13/2024

Data Governance Committee Meeting 20250213

Attendees: David Hansen, Georgia Davis, Nicole Rioles, Kathryn Obrynba, Grace Nelson, Ruth Weinstock, Holly Hardison, Marina Basina, Joyce Lee, Nicole Sheannon

Agenda:

• Welcome
• Updates on Industry Sponsored Projects
• Discuss decisions for post-SOW timeline of July 2025-
• Next meeting

Industry Sponsored Projects:

• IMPROVAID
  1. Kickoff meeting with centers on 2/13/2025
  2. Timing of initiation of AID and outcomes
• Increasing diversity in referrals for Vertex 880 Study
  1. Sharing deidentified data with those that are referred, contacted, and recruited for study
• Screening T1D
  1. Sanofi project
  2. Qualitative and Quantitative data on number of people screened for diabetes and referred to teplizumab
• Health Equity BPA
  1. Progression in AID, CGM and looking at changes in prescriptions rates of race and ethnicity

Non-Sponsored Projects:

• T2D Peds
  • Sharing Smart sheet data on A1C, BMI, Blood pressure, CGM
• Adult T2D
  • Sharing T2D patients data via data mapping

Statements of Work Updates:

• All SOW’s not associated with special projects will expire in June 2025
• T1D Exchange will not be renewed SOW after 6/1/2025
• Clinics are eligible to participate in special projects after data mapping is complete
• Thoughts on having a contractual document that has language saying “centers may have the option to participate in funded projects for financial support, however funding for sharing data will not be in place”
• Recommendations
  • Keep DUA in place and don’t try to add/complicate with additional paperwork [that some hospital systems are not looking for]
  • Might explore potential/additional contracts, based on institutional requirements/requests
• Collaborative is not going away just because SOW’s are ending
• Data Use Agreements are evergreen (auto-renewing annually) and spell out the terms of the relationship between T1D Exchange and each participating center.
  • DUAs are tied to the Portal Protocol/IRB, which can be referenced on the member website. T1D Exchange’s role as a Business Associate is in the form of: 1. Convening the QI Collaborative; 2. Providing data benchmarking and shared learning through the tools of the Portal and Collaborative meetings
  • Portal endures as a place to learn and grow in data and sharing through data benchmarking and the resource library, etc.

Next Meeting: Thursday May 8^th 10-11am EST

Link to Recording: https://youtu.be/CJ6yoF7DgC4