HeartShare DeCODE-HF: Data translation center to Combine Omics, Deep phenotyping, and Electronic health records for Heart Failure subtypes and treatment targets

NIH RePORTER · NIH · U54 · $303,614 · view on reporter.nih.gov ↗

Abstract

Title: Extraction of SDOH elements from multisite EHR for endorsed CDE mapping and analysis: HeartShare Project Summary: Heart failure with preserved ejection (HFpEF) is a highly prevalent and complex disorder that confers a substantial burden of morbidity and mortality. In contrast with the many evidence-based therapeutic options available for heart failure with reduced ejection fraction (HFrEF), progress for disease-modifying therapies for HFpEF has been limited and five-year survival rates following hospitalization have remained stagnant at approximately 50%. A major barrier in identifying effective treatments for HFpEF (identified by the NHLBI HFpEF Working Group convened in 2020) is the “one size fits all” approach to what is a heterogeneous syndrome that comprises many different subtypes.1 Therefore, the primary goals of HeartShare are to classify heart failure with preserved ejection fraction (HFpEF) into distinct phenotypes, characterize disease mechanisms, and identify therapeutic targets for each HFpEF subtype. The study includes three overlapping components; a prospective, observational study of patients with HFpEF and controls that begins with an intensive in-person assessment, a low-touch longitudinal registry and a HeartShare EHR Study. In the EHR study, a multi-center retrospective cohort of patients with heart failure is being created to better understand the epidemiology and health care patterns of a large, diverse population of patients with HFpEF across seven health systems. A supplement focusing on extraction of SDOH information with mapping to established CDE in HeartShare accomplishes numerous objectives; 1) raising the awareness of CDE in the Heart Failure advocacy and research communities (who are highly integrated in the program) promote collection of high quality interoperable data in future trials and studies 2) generation of high-quality individual-level SDOH data from a large EHR dataset—which would be expected to contain more diversity in SDOH than many trials and studies which often disproportionately enroll individuals of higher SES and 3) integration of individual-level SDOH into numerous HeartShare datasets facilitating numerous analyses investigating the critical role of SDOH as exposures, covariates, and mediators for key Heart Failure outcomes. Over the past several years, many health systems have begun to systematically collect individual- level, health-related social risk data; the collection of this data was motivated both by internal interest to implement programs to advance health equity as well as evolving external incentives and requirements focused on this type of data collection. Although several groups, such as the HL7 Gravity Project and PhenX, have sought to develop consensus-driven standards for health-related social risk data from research participants and patients, these standards have not been widely adopted by individual health systems or EHR vendors and the result is a wide variety of data co...

Key facts

NIH application ID
11167161
Project number
3U54HL160273-04S1
Recipient
NORTHWESTERN UNIVERSITY
Principal Investigator
Abel N. Kho
Activity code
U54
Funding institute
NIH
Fiscal year
2024
Award amount
$303,614
Award type
3
Project period
2024-09-01 → 2026-06-30