August 20, 2024

Attendees: Emma Ospelt, Mary Pat Gallagher, Patrick Hanley, Nirali Shah, Susan Thapa, Andrew Lavik, James Dawson, Ryan McDonough, Todd Alonso, Justin Indyk, Meenal Gupta, Mark Clements, Anton Wirsch, Saketh Rompicherla

Final DSC August 24 Meeting Slides

Agenda

• Introductions-Ryan McDonough and Nirali Shah
• T1D Exchange Updates- Emma
• T1D Data Specification Updates- Emma
  • Version 3.1 and 4.0
• T2D Data Specification Updates- James

Type 1 Diabetes Mapping Updates

• 37 centers fully mapped (from 35 centers in Q2)
• 4 in validation phase

Type 2 Diabetes Mapping Update

• 3 centers fully mapped
• 2+ centers still in the mapping process

Scorecards Update

• Data completeness scorecards are in final processing now

T1D Data Specification Updates

3.1 Version

Formatting Changes

• Merged diabetes and core data specification files into one specification document
• Removed type, format, and response columns in all files and added this into the note sections for easier use
• Added all loinc code information into notes columns as well

Changes to Patient File

• Changed language from gender to sex. Sex is now defined as sex at birth
  • Conversations to continue on this. Suggesting adding in gender identifty and pronouns, surveying centers to see who is reporting on what
• Additional languages were added for patient language and caregivers’ language
• Additional education levels added

Changes to Provider File

• Removal of Provider of Service ID, Drug Enforcement Agency number and Other ID.
• Will be moving forward with NPI ID collection.

Changes to Observations File

• Point of care (PoC) HbA1c added

Changes to Diabetes File

Diabetes Insulin:

• Added in all smart insulin pen devices, removed non smart insulin pen devices

Diabetes Monitoring:

• Added G6-pro and G7 CGM for Dexcom and Freestyle Libre 3 (Abbot)
• Add a few additional devices-make sure up to date on this

4.0 Version

• Same formatting changes

Changes to Observations File

Adding:

• Diabetes Distress Screeners
  • Different screeners for pediatric and adult centers
• ASQ Suicide Screening

Pending Changes for Stages of Diabetes

• Once ICD-10 codes are released for stages these will be added

T2D Data Specification 1.0 Version

• Same formatting changes
• Same changes to patient file as T1D spec

Changes to Provider File

• Removal of Provider of Service ID, Drug Enforcement Agency number and Other ID.
• Will be moving forward with NPI ID collection.

Changes to Encounters File

• Changed the allowed values for endo_visit variable to include encounters within primary care.
• For encounter class created a distinction for virtual_ambulatory and virtual_education visits.

Changes to Observations File

• Point of care (PoC) HbA1c added
• Collection of ASQ Suicide Screening survey
• Waist Circumference data collection

Changes to Medications File

• Simplified medication status to only include active and inactive prescriptions.

Changes to Diabetes File

Diabetes Guidelines:

• Added source_value variable for the collection of unmodified pre mapped versions of specific variables (mostly for device mapping)

Diabetes Disease:

• Added date of T2D diagnosis (t2d_dx_dt)

Diabetes Insulin:

• Added in all smart insulin pen devices, removed non smart insulin pens
• Updated insulin pump companies to include those from CeQur, Mannkind and Beta Bionics
• Added manual mode option for insulin pump delivery system (ins_pump_delivery)
• Updated insulin_regimen to include inhaled insulin as allowed value

Diabetes Monitoring:

• Added cgm models G6-pro and G7 CGM for Dexcom and Freestyle Libre 3 (Abbot)