Electronic Data Capture Overview
About the Electronic Data Capture Workgroup
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.
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EDC Workgroup Key Accomplishments as of May 2023
Requirements
- Determined the common UDS data flow used across 29 participating ADRCs: Survey to be sent to 37 all ADRCs
- Deployed data management plan in alignment with NIH's data sharing policy: Valuable for ADRCs seeking renewal
- 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
- 40% of REDCap forms developed and review process is underway
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
Interested in sharing this page?
Why REDCap?
REDCap was chosen because it is the canonical tool for forms data capture. As of our April 2022 survey, most (29) ADRCs are already using REDCap or intend to adopt it.
Benefits of REDCap
Data Submission at NACC
In the future, all data will go through REDCap at NACC via one of these options:
Streamlining and Reducing Burden with 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 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.
Massachusetts ADRC
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.
South Texas ADRC
Alabama Exploratory ADRC
NACC
Development Subgroup:
Design, build and test EDC technologies including data quality validation.
Michigan ADRC
NACC
Documentation and Training Subgroup:
Design and develop training materials and SOPs for EDC (REDCap, in particular) at ADRCs as well as make existing resources more readily available to the community.
OHSU ADRC
NACC
Coordination
NACC
This work is made possible by the EDC Workgroup members and participating ADRC's:
