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Expert Meeting on Deriving Common Data Elements from Real-Word Data for Alzheimer’s Disease and Alzheimer’s Disease Related Dementias

On February 6, 2023, the National Institute on Aging (NIA) convened an exploratory discussion with fourteen expert panelists in the fields of Alzheimer’s disease (AD)/Alzheimer’s disease-related dementias (ADRD) biomedical and clinical research, epidemiology, and data science. The goal of the meeting was to identify opportunities to accelerate AD/ADRD research using real-world-data (RWD). The meeting focused primarily on Common Data Element (CDE) methods that can be applied for harmonizing data contained in RWD including healthcare claims and electronic health records (EHRs).

There is a recognized need for research which is integral to the development of treatments and interventions for AD/ADRD. NIA convened the meeting to determine the best use of data sources from claims and EHR and their role in common data models (CDMs). The plan for the meeting primarily included four primary outcomes:

  • Eliciting preliminary expert feedback on developing CDE domains for data harmonization.
  • Identifying AD/ADRD research questions that RWD and CDE development can address.
  • Prioritizing next steps for CDE development and additional CDEs for upcoming AD/ADRD therapeutics and biomarkers.
  • Identifying actionable research priorities for NIA’s consideration and research questions that could advance the field of aging research.

The meeting summary (PDF, 446K) is available.

One of the workshop’s proposed research priorities is to determine what linkage strategies could facilitate AD/ADRD research and how could CDE methods be used to enhance data linkage. The workshop panel also suggested that NIA explore how to share data with researchers in a manner that preserves privacy preserving manner.

Relatedly, the project team produced an ancillary report entitled, “Privacy Preserving Record Linkage (PPRL) Strategy and Recommendations” to provide a summary on available PPRL resources and their utility for NIA funded work.

This report is available (PDF, 489K).

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