Overview
NACC is currently collaborating with the ADRCs to develop an electronic data capture systems for UDSv4 that will effectively serve the needs of the ADRC program.
The Electronic Data Capture (EDC) Workgroup was launched by NACC in collaboration with the Data Core Steering Committee in January 2022.
The EDC Workgroup is currently comprised of approximately 84 members from across approximately 32 ADRCs who are collaborating across three subgroups to co-develop REDCap forms, define requirements, and to develop training and education materials for UDSv4.
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
Key Accomplishments of the EDC Workgroup
Requirements
- Developed Crosswalks to help ADRCs to harmonize data between UDSv3 and UDSv4
- Summarized data quality checks for UDSv4: To be shared with all ADRCs
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
- Built a curated directory of valuable REDCap resources
- Developed NACC-specific REDCap SOPs to facilitate ADRCs submitting UDSv4 data to NACC
- Designing a webpage to make resources accessible to the ADRCs
This work is made possible by the EDC Workgroup members and participating ADRC's:
Data Submission at NACC
All data is submitted to NACC via one of these options:
- Direct data entry into NACC REDCap
- Synchronize Local ADRDC REDCap instances through REDCap APIs
- Bulk upload of .csv files
Benefits of REDCap
- Data Collection Options - Directly into EDC via computer or tablet OR Directly entered by staff and/or participant optionally via survey link
- Data Submission Options - Via API
- QA/QC Options - Enforcement on question and form level; can also be applied across form
- Export Options - Into R and Excel (amongst other options)
- Staff Support - Training resources, including SOP's
EDC Leads, Co-Leads, and Members
Workgroup Leads:
Leads the EDC Workgroup All Hands Meetings and oversees the EDC Workgroup leads meetings with the subgroup co-leads.
Sudeshna Das, PhD
Massachusetts ADRC
Sarah Biber, PhD
Washington University
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 ADRC's 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 as well as make existing resources available to the community.
Niranjana Shashikumar, MS
Vanderbilt Exploratory ADRC
Laura McLeod, BBA
NACC
Coordination:
Hannah Stockwell
NACC
Jessica Welsch, MBA
NACC
The work of the EDC Workgroup would not be the same without the dedication, energy, and engagement of Will Affleck-Asch from the University of Washington ADRC. Though he is no longer with us, his important contributions live on to support the mission of all those engaged with NACC and the research and progress fueled by these data.