December 7, 2023

12- 12:45 pm ET

Real-World Data (RWD), such as electronic health records, claims and billing data, originate from everyday health care interactions, making it a crucial resource for various medical research and applications. Common Data Elements (CDEs) are defined fields and structures that enable interoperability among data systems and have the potential to harmonize RWD to assist Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) research. This approved concept (https://www.nia.nih.gov/approved-concepts) proposes a cooperative agreement in which researchers will standardize vocabulary and identify, develop, and test longitudinal CDEs by using electronic health record data and the Centers for Medicare & Medicaid Services Chronic Conditions Data Warehouse data. These CDEs will encompass various categories, including but not limited to 1) patient and caregiver information, 2) disease characterization, including multiple chronic conditions, 3) health assessment, 4) biomarkers and genomics, 5) treatment, 6) patient and caregiver outcomes, and 7) non-health (e.g., financial, education, employment status, living arrangement, food, housing, or transportation security) data. Further, this initiative aims to help identify specific risk factors that will aid earlier diagnosis and treatment of mild cognitive impairment and dementia. The cooperative agreement would require collaboration with the RFA-AG-24-009 awardee.

 

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