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 75 members from across approximately 28 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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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:
EDC Leads, Co-Leads, and Members
Workgroup Leads:
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.
Development Subgroup:
Design, build and test EDC technologies including data quality validation.
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.
This work is made possible by the EDC Workgroup members and participating ADRC's:
EDC Workgroup Key Accomplishments as of September 2022
Development
- Developed and standardized the database architecture, workflow, and navigation for all the UDSv4 REDCap forms – to streamline the submission process.
- Established the infrastructure for longitudinal data collection with the REDCap forms – to facilitate streamlined data submission, extraction, and analysis. This will result in better representation of longitudinal data.
Requirements - Standards and Best Practices
- Defined and documented UDS data flow from collection to submission and the quality assurance process. The goal is to make the quality assurance process more transparent to the ADRC community and to establish and promote best practices in quality assurance.
- Development of a data management and sharing plan in alignment with the upcoming NIH data sharing policy – this will be a valuable resource for new and renewing centers submitting NIA funding applications.
Documentation and Training
- Consolidation and enumeration of pre-existing REDCap resources that will be valuable for sites seeking to advance their REDCap development and usage.
- Development of NACC-specific REDCap SOPs that will facilitate UDSv4 data submission to NACC
- NACC and this subgroup are collaborating on designing and developing a webpage to make all the above resources readily available to the ADRC community.