T1D Monitoring Project meeting minutes 12/8/23

T1D Screening and Monitoring Project meeting 12/8/23 2:00 PM ET

Participants: Dr. Carla Demeterco-Berggren; Dr. Laura Jacobsen; Dr. Osagie Ebekozien; Nicole Rioles; Ann Mungmode; Emma Ospelt, Dr. Anastasia Albanese-O’Neill, Michael Meyer, Dr. Raquel Lopez-Diez, Kelly Alladina

Agenda:

Minutes:

Welcome and Introductions

• Welcome to JDRF staff!
• Ann and Emma are happy to meet with Kelly and Dr. Lopez-Diez to share more about the T1D Exchange and this monitoring project with JDRF

JDRF Consensus Monitoring Guidance overview

• Four workgroups met to create Guidance
  • Pediatric, Adult, Psychology, Education
• Will be shared at ATTD as a panel
• What do we call screening to people at risk?
  • Suggestions about language
  • Screening is NOT the same as diagnosis
    • Mostly, will get good news
  • Split into recommendations for more than one and single autoantibody detected
  • May be helpful to share in areas where consensus does not exist
    • How to monitor
    • How to monitor with CGM
    • When to start insulin
    • What to monitor with (i.e., OGTT, etc.)
  • Suggestions around who should be involved in monitoring
    • e., engaging primary care; when to hand off when T1D progresses
  • Earlier versions of the Guidance had flowcharts which could be very helpful
    • These would be very useful for centers who may need a rationale for doing this work
    • Use Guidance as a tool for advocacy for spreading across centers
    • People are hesitant to start unless they have all of the pieces lined up (screening, monitoring, interventions, etc.)
    • Rady team, for example, is starting with a pilot
      • Leveraging many moving parts within the organization
    • JDRF recommends focusing on monitoring
      • There are helpful figure and tables in the Guidance
    • What are centers planning to do for adults?
      • Rady will refer patients 18+ to adult center
      • UF will keep 18+ patients for now
    • We are equally interested in the things that don’t go well as the things that do!
    • Albanese-O’Neill will share JDRF resources
      • Pre-screen
      • Post-screen
      • How to order
    • Perhaps on a future call, we can also invite other centers involved with JDRF who have monitoring workflows, etc. and host a broader learning community

Smartsheet review

• Do we want to track individuals that screen for single vs. multiple autoantibodies?
• We have data for newly diagnosed patients on the back end already
  • We combined Stage 3/new onset for simplicity in reporting
• A1c between 5.7% and 6.4% for dysglycemia
  • Written this way originally to see if patients are having A1c that is still dysglycemia but below 7%
  • Make clear this is a subcategory of Stage 3 (at diagnosis)
• Clarify that measures are regarding patients seen that month
• Do we want to separate that we offered screening vs. screening completed?
  • Difficult to see if offered and declined or negative
• Do want to track confirmatory tests for other testing
• Number of individuals eligible for monitoring
  • Which treatment track did they select?
    • Research
    • Monitoring
    • Tzield
  • DKA at diagnosis

Fishbone diagram

• Not covered today – we will work on next time

Wrap up and next meeting

• Next steps
• Albanese-O’Neill to share updated version of Guidance on Monday and JDRF resources
• T1D team to update Smartsheet and share out
• Next call will be scheduled with a focus on Fishbone diagram completion

Meeting recording: https://t1dexchangeinc-my.sharepoint.com/personal/amungmode_t1dexchange_org/_layouts/15/stream.aspx?id=%2Fpersonal%2Famungmode%5Ft1dexchange%5Forg%2FDocuments%2FQI%20Collaborative%2FLearning%20Sessions%2FRecordings%2FT1DX%2DQI%20JDRF%20Screening%20and%20Monitoring%20project%20check%2Din%2D20231208%5F140219%2DMeeting%20Recording%2Emp4&referrer=StreamWebApp%2EWeb&referrerScenario=AddressBarCopied%2Eview&ga=1