NACC COVID-19 Supplement
COVID has had an enormous impact in the United States with higher death rates in older people. We want to facilitate a deeper understanding of the impact of COVID in AD/RD.
Expanding Longitudinal COVID-19 Data Collection
NACC is building a novel platform to expand longitudinal COVID-19 data collection, integrate new data streams, and open the door to impactful new COVID-19 and ADRD discoveries. This powerful new tool links routine clinical care (EHR), claims (CMS), and genetic (NIAGADS/ADSP) data with the rich longitudinal cognitive assessment data collected from across the ADRC Program and housed at NACC. This will create one of the largest and most comprehensive longitudinal datasets in the world for an age group at high risk for COVID-19 infection. Additionally, the dataset includes valuable cognitive, behavioral, genetic, and neuroimaging data collected prior to infection.
COVID-19 Supplement Update (December 2022)
Capturing the Impact of COVID at ADRCs
The impact of this platform will be further amplified as NACC integrates additional ADRC data streams into its database, including standard neuroimaging data, and makes them all searchable and accessible through the Data Front Door. This initiative builds on NIA’s investments in the ADRC Program and will use the LINKAGE (formerly MedRIC) platform, an NIA funded partner, as the secure computer enclave for combining and analyzing the data that is collected.
The data linkage infrastructure and harmonization model we're developing will enable robust prospective investigations of Long Covid, support other critical NIH initiatives, such as ADSP and the VA’s Million Veterans Project, and leverage genomic data linked to phenotypic data (NACC), routine clinical care (EHR), and claims (CMS) data.
COVID Impact Forms
The CTF and NACC developed the COVID Impact Survey at the start of the pandemic and released the first forms in June 2020 to capture how COVID testing and infections were affecting the AD community. As the pandemic evolved and vaccinations became available, NACC and the CTF redesigned the forms to capture this valuable information. A new form was released in July 2022 for recording vaccinations, outpatient treatments, hospitalizations, and long COVID.
Download COVID Impact Forms
Start collecting COVID Impact data at your ADRC by downloading the forms and REDCap XML files.