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.
EDC Workgroup goals
Interested in getting involved?Join here

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.
RedCap Adoption metrics
Responses as of April 11, 2022

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

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

EDC Leads, Co-Leads, and Members

Workgroup Leads:

Sudeshna Das, PhD

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

    Kari Stephens, PhD

  • Development Subgroup:

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

    Jon Reader

    Ben Keller, PhD

  • 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

    Leah Reuter

    Laura McLeod

  • 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
    NYU ADRC
    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
    USC 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

    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.