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.
EDC Workgroup goals
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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

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Why REDCap?

RedCap Adoption metrics
Since launching in January of 2022, the EDC Workgroup has been enabling adoption of REDCap across the ADRC Program.

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
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

Data Submission at NACC

In the future, all data will go through REDCap at 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

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.

Sudeshna Das, PhD

Massachusetts ADRC

Sarah Biber, PhD


  • 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

    Alabama Exploratory ADRC

    Kari Stephens, PhD


  • Development Subgroup:

    Design, build and test EDC technologies including data quality validation.

    Jon Reader, MS

    Michigan ADRC

    Kathryn Gauthreaux, MS


  • 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.

    Sarah Gothard, BS


    Laura McLeod, BBA


  • Coordination

    Hannah Rosentreter


    Jessica Welsch, MBA


  • This work is made possible by the EDC Workgroup members and participating ADRC's:

    1Florida ADRC
    Boston University ADRC
    Cleveland ADRC
    Columbia University ADRC
    Duke / UNC ADRC
    Emory University, Goizueta ADRC
    Indiana University ADRC
    Knight ADRC
    Massachusetts ADRC
    Michigan ADRC
    Northwestern ADRC, Mesulam Center for Cognitive Neurology and Alzheimer's Disease
    Mayo Clinic Minnesota, ADRC
    Mount Sinai ADRC
    OHSU Layton Aging and Alzheimer's Disease Research Center
    Penn ADRC / Penn Memory Center
    South Texas ADRC
    Stanford ADRC
    UC Davis ADRC
    UC Irvine, ADRC
    University of Kansas ADRC
    University of Kentucky ADRC, Sanders-Brown Center on Aging Clinic
    University of Washington ADRC
    Wake Forest ADRC, Sticht Center for Healthy Aging and Alzheimer's Prevention
    Wisconsin ADRC
    Yale ADRC
    Vanderbilt ADRC
    University of Alabama, Birmingham ADRCUniversity of New MexicoCleveland Clinic Lou Ruvo Center for Brain Health