Pilot Data Streams

EHR/CMS

NACC was awarded an Administrative Supplement in 2021 to conduct a preliminary study to integrate EHR, CMS, COVID-19, and genetic data into ADRC data collection for three pilot ADRC sites within a secure, analysis-ready enclave (hosted by LINKAGE, formerly MedRIC). As part of this project, NACC leveraged National Clinical Cohort Collaborative (N3C) data already collected at each pilot ADRC site, standardized it to the OMOP common data model, and harmonized the data across the three sites. NACC worked with LINKAGE to match participants from the pilot sites with their CMS claims data. This pilot project lays the foundation for NACC to scale EHR, CMS, COVID-19, and genetic data collection and integration to all 36 ADRCs to help uncover relationships between COVID-19 and AD/ADRD and to make ADRC EHR/Claims data available to advance AD/ADRD discovery more broadly. For more information on NACC’s LINKAGE Enclave, visit the Data Front Door page. 

Digital biomarker data

The NACC DP will also digitally integrate ADRC participant fluid biospecimen (i.e., blood and cerebral spinal fluid) metadata and analysis data housed at NCRAD. The biospecimens are analyzed to detect biomarkers of disease, which can be interrogated with multi-omic data from the AD Knowledge Portal to discover new biomarkers. New biomarkers that could be used for early diagnosis and/or as targets for disease-modifying drugs in the future.

NACC has launched and made significant progress on the Digital Biomarker Pilot Project in close collaboration with Dr. Rhoda Au of Boston University and Dr. Allan Levy of Emory University to support the collection of digital biomarker data and develop a pipeline for data collection, QA/QC, transfer, integration, and sharing via the NACC DP as part of the NACC Year 3-5 Administrative Supplement.

Digital neuropathology data

Metadata and analysis data related to brain autopsy tissue will be available through the NACC DP and integrated across all participant data. NACC plans to incorporate digital neuropathology data from the Brain Digital Slide Archive (BDSA) and the CLARiTI initiative. The goal is to standardize the method of analysis, collection, and formatting of this data so it is comparable across all data sources. 

NACC began building out the components necessary to pilot the submission, integration, and analysis of digital neuropathology data within the NACC Data Platform. This pilot will test whether the DP (powered by Flywheel) can be effectively leveraged to collect, integrate, and analyze digital neuropathology data from across the ADRC Program. NACC identified a test dataset and finalized the technical requirements for this pilot in collaboration with our partners at UC Davis and UW.

Brain Digital Slide Archive (BDSA)

The BDSA project is an open-source platform for data sharing and analysis of digital neuropathological slides (U24) - a collaboration with Dr. David Guttman, at Emory, to develop a federated, open-source, Brain Digital Slide Archive (BDSA) platform to streamline AD/ADRD research. This will provide researchers with sophisticated tools to manage, visualize, and analyze the spectrum of AD/ADRD brain whole slide images. NACC has collaborated with the BDSA team to make progress towards the launch of the Brain Digital Slide Archive project.

Digital voice

NACC facilitated the formation of the UDSv4 Digital Voice Sprint team to support ADRC’s in adopting digital voice data collection. The sprint team developed guidelines and resources that were shared at the Fall ADRC Meeting in October 2024. In coordination with the CTF Technology Workgroup, the sprint team continues to develop additional guidelines and standardized processes for collecting, deidentifying, processing, and sharing digital voice data. NACC is evaluating the requirements for accepting submissions and ingesting UDSv4 digital voice data into the NACC Data Platform.  

Multi-omics from the AD Knowledge Portal

NACC will integrate multi-omics metadata variables for ADRC participants from Mayo P30 Multi-Omics Core and Alzheimer’s Gut Microbiome Project (AGMP) within the NACC DP. The metadata will be developed by Sage Bionetworks.  NACC is building an interoperability pipeline with Sage (potentially an API) that will enable multi-omics metadata and analysis results from ADRC participants to be accessed via the NACC QAF DRS. The metadata and analysis results that NACC ingests from Sage will be linked via the NACCID to all other multimodal data streams available for the same participants via the NACC DP. 

NACC will also work with Sage to establish metadata flow from NACC to the Sage AD Knowledge Portal. Our goal will be to enable researchers searching for data within the AD Knowledge Portal to see what types of data are available within the NACC Data Platform for participants of interest. Researchers visiting the AD Knowledge Portal will be able to determine whether the following data types are available within the NACC Data Platform: UDS, neuropathology, mixed methods MRI/PET, standard MRI/PET (SCAN/CLARiTI), NCRAD (Yes/no data initially and then top 5 blood biomarkers at a later date), Biomarker (CSF), NIAGADS (Yes/no for GWAS and sequencing data; GWAS and sequencing can be requested using NACC IDs), and modules (LBD, FTLD, Down Syndrome).