Overview
The Electronic Data Capture (EDC) Workgroup was launched by NACC in collaboration with the Data Core Steering Committee in January 2022. NACC worked closely with the EDC Workgroup to develop an electronic data capture system (EDCS) for UDSv4 that would better serve the needs of the ADRC Program. The EDC Workgroup developed REDCap forms, defined requirements, and developed training and education materials for UDSv4.
The EDC Workgroup is currently comprised of three subgroups and ~84 total members from across 32 ADRCs.
Benefits of Electronic Data Capture
Save Time
- Auto-filled drug options (RXNorm)
- Auto-populated health history data for follow-up visits
- Skip-logic
- Access to automated NACC tools connected to data
- On-demand centralized robust training
Enhance Sharing
- Improved solution co-development and sharing amongst ADRCs
- Conserved resources through centralization
- Automatic EHR (Epic) to REDCap extractions for ADRCs that capture EHR data for UDS visits
Improve Data Quality
- Real-time form error checks
- Reduced multiple choice errors
- Transparent and replicable QC processes
- Improved standardization and error checks via centralization
- Enhanced utilization for analysis and other scholarly activities
EDC Workgroup Deliverables
Development
- Streamlined and standardized the REDCap submission process, quality checks, and variable names
- Established the infrastructure for longitudinal data collection
- 100% of USDv4 Initial Visit REDCap forms developed
Documentation and Training
- Developed Crosswalks to help ADRCs to harmonize data between UDSv3 and UDSv4
- Summarized data quality checks for UDSv4
- Created library of UDSv4 resources, including useful REDCap resources
- Developed NACC-specific REDCap SOPs to facilitate ADRCs submitting UDSv4 data to NACC
REDCap
- Data collection options, including entering directly into EDC via computer/tablet OR staff and/or participant can enter via survey link
- Supports data submission via API
- QA/QC options, including enforcement on question and form level
- Export into R, Excel, and other formats
- Staff support with training resources, including SOPs
EDC Leads, Co-Leads, and Members
Workgroup Leads
Lead the EDC Workgroup with subgroup co-leads.
Sudeshna Das, PhD
Massachusetts ADRC
Development Subgroup
Design, build, and test EDC technologies, including data quality validation.
Jon Reader, MS
Michigan ADRC
Kathryn Gauthreaux, MS
NACC
Requirements Subgroup
Identify and recommend best practices for EDC/REDCap data capture and requirements for data collection, data quality checking, and data transformation from ADRCs to NACC.
Meredith Zozus, PhD
South Texas ADRC
Chad Murchison, PhD
UAB ADRC
Documentation and Training Subgroup
Design and develop training materials and SOPs for EDC at ADRCs and make existing resources available to the network.
Niranjana Shashikumar, MS
Vanderbilt Exploratory ADRC
Laura McLeod, BBA
NACC
Coordination
Provide project management and coordination, including scheduling, project plans, agendas, communications, and meetings.
Hannah Stockwell
NACC
Jessica Welsch, MBA
NACC
Thank You
This work is made possible by the EDC Workgroup members and participating ADRCs:
