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 ADRD.
NACC will build 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 Alzheimer’s Disease and Research Centers (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.
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 an innovative new interface. This initiative builds on NIA’s investments in the aforementioned databases and programs, and champions the MedRIC platform, an NIA funded partner, as the secure computer enclave for combining and analyzing the data collected through this new consortium model for the ADRC community. Furthermore, the data linkage infrastructure and harmonization model we are developing will enable robust prospective investigations of Long Covid and support other critical NIH initiatives, such as ADSP, and the VA’s Million Veterans Project, seeking to leverage genomic data linked to phenotypic data (NACC), routine clinical care (EHR), and claims (CMS) data.
COVID Impact Forms Are Now Available
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 recording vaccinations, outpatient treatments, hospitalizations, and long COVID.
Start collecting COVID Impact data at your ADRC today. Forms and REDCap XML can be downloaded here