Table 1 The IHCC-DAC model for program development

I

Design and implement a pilot program that will serve as a proof-of-concept for feasibility and delineate requisite resources/strategies that would support a large-scale program. An online survey assessed a) data availability among IHCC cohorts, and b) feasibility to generate new data.

II

Establish a high-priority cohort based on polygenic risk scores (PRSs): Individuals at highest risk are targeted for deep phenotyping—beginning with what exists readily and correlates with dementia risk. Examples include hypertension, heart failure, CAD/PAD, CVAs (stroke/MI), type 2 diabetes, and obesity—all of which can be collected from ICD and billing codes and can be validated through re-contact (where consent allows) for deeper molecular phenotyping.

III

Identify high-risk individuals with pre-dementia or early dementia symptoms in the age range of 45–70 years who can be invited to undergo additional workup/testing, including imaging and biomarker studies.

IV

Prioritize pursuit of cohorts with patient re-contact and IRB-approved broad-based data sharing plans (or such feasibility) across all races and ethnicities: Racial and ethnic minority populations, underserved populations, and populations who experience poorer medical outcomes have been underrepresented in genomic research to date. This is widely recognized as detrimental to efforts to catalog and interpret genomic variants and use them to improve clinical care. Addressing these health disparities is considered fundamental to the goals of IHCC and is similarly a key focus of the proposed project with DAC.