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Strategic Data Management Roadmap

Strategic Data Management Roadmap

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NACC continues to expand our resources, as well as the functionality of the Data Platform and ADRC Portals to support efficient data management, integration, and access across the ADRC Program. The following details ongoing and upcoming enhancements that are aligned with our UDSv4 implementation and multimodal data integration priorities.

Recently Released

Spanish UDSv4 Follow-Up Visit Packets (FVP)

These packets expand access to standardized follow-up assessments for Spanish-speaking participants across ADRCs.

New “Available Modalities” in the ADRC Portal 

This feature allows users to easily view and download the data modalities available for participants at their center. To explore, in the ADRC Portal navigate to: Manage Participants→Available Data Modalities 

ADRC Portal Expands with NCRAD Biomarker Data

NCRAD biomarker analysis data are now available to ADRCs through the ADRC Portal, including return-based control data and a new data dictionary. This update replaces the previous email-based request process, making it faster and easier for ADRCs to access NCRAD data.

ADRC Community Library

Share tools and resources with your colleagues by posting a topic in the ADRC Program Community Forum’s new ADRC Community Library. (Requires a Forum account to access.)

Updated Best Practices

ADRC best practice documents covering topics such as biomarker collection, remuneration, digital voice capture, and EAC guidelines are now available on the Best Practices.

 

 

 

Updates Coming Soon

Q2: April 1 – June 30

  • UDSv4 Down Syndrome Data Accepted
    NACC will start accepting Down Syndrome data associated with UDSv4 in the ADRC Portal, expanding data collection capabilities and supporting broader research efforts.
  • ADRC Program Reports Update
    Our ADRC Program Reports (beta) will be enhanced with additional charts to provide deeper insights. 

 

Explore All of NACC's Articles

Page 1 - Showing 1 to 5 from 29 results
Alzheimer's Association: Advancing AD/ADRD Research through Collaboration
Maria Carrillo, PhD, shares how long-standing collaboration between the Alzheimer’s Association, NACC, and the ADRC Program is advancing research, expanding support for early-career investigators, and strengthening data sharing across the field.
Strategic Data Management Roadmap
The following details ongoing and upcoming enhancements to the NACC Data Platform
Pump Up The Volume
Hearing loss can decrease quality of life, contribute to social isolation and stress, and may increase the risk for neuropsychiatric symptoms. A new study explores the impact hearing aids may have on reducing neuropsychiatric symptoms.
CLARiTI: Building a Clearer Picture of Dementia
Dementia often involves multiple underlying diseases, but research has traditionally studied them in isolation. CLARiTI enables large-scale, standardized imaging across ADRCs to better understand and share insights on these complex conditions.
Digging for Details on Traumatic Brain Injury
Using the NACC dataset, researchers have conducted the largest matched case-series study to date of the clinical and neuropsychological effects of chronic traumatic encephalopathy neuropathologic change (CTE-NC).