Facilitating Harmonization of Variables in Framingham, MESA, ARIC, and REGARDS Studies Through a Metadata Repository.

BACKGROUND: High-quality research in cardiovascular prevention, as in other fields, requires inclusion of a broad range of data sets from different sources. Integrating and harmonizing different data sources are essential to increase generalizability, sample size, and representation of understudied populations-strengthening the evidence for the scientific questions being addressed. METHODS: Here, we describe an effort to build an open-access repository and interactive online portal for researchers to access the metadata and code harmonizing data from 4 well-known cohort studies-the REGARDS (Reasons for Geographic and Racial Differences in Stroke) study, FHS (Framingham Heart Study), MESA (Multi-Ethnic Study of Atherosclerosis), and ARIC (Atherosclerosis Risk in Communities) study. We introduce a methodology and a framework used for preprocessing and harmonizing variables from multiple studies. RESULTS: We provide a real-case study and step-by-step guidance to demonstrate the practical utility of our repository and interactive web page. In addition to our successful development of such an open-access repository and interactive web page, this exercise in harmonizing data from multiple cohort studies has revealed several key themes. These themes include the importance of careful preprocessing and harmonization of variables, the value of creating an open-access repository to facilitate collaboration and reproducibility, and the potential for using harmonized data to address important scientific questions and disparities in cardiovascular disease research. CONCLUSIONS: By integrating and harmonizing these large-scale cohort studies, such a repository may improve the statistical power and representation of understudied cohorts, enabling development and validation of risk prediction models, identification and investigation of risk factors, and creating a platform for racial disparities research. REGISTRATION: URL: https://precision.heart.org/duke-ninds.

Reproductive Experiences and Cardiovascular Disease Care in Pregnancy-Capable and Postmenopausal Individuals: Insights From the American Heart Association Research Goes Red Registry.

To evaluate preconception health and adverse pregnancy outcome (APO) awareness in a large population-based registry. We examined data from the Fertility and Pregnancy Survey of the American Heart Association Research Goes Red Registry to questions regarding prenatal health care experiences, postpartum health, and awareness of the association of APOs with cardiovascular disease (CVD) risk. Among postmenopausal individuals, 37% were unaware that APOs were associated with long-term CVD risk, significantly varying by race-ethnicity. Fifty-nine percent of participants were not educated regarding this association by their providers, and 37% reported providers not assessing pregnancy history during current visits, significantly varying by race-ethnicity, income, and access to care. Only 37.1% of respondents were aware that CVD was the leading cause of maternal mortality. There is an urgent, ongoing need for more education on APOs and CVD risk, to improve the health-care experiences and postpartum health outcomes of pregnant individuals.

Longitudinal Trends in Cardiovascular Risk Factor Profiles and Complications Among Patients Hospitalized for COVID-19 Infection: Results From the American Heart Association COVID-19 Cardiovascular Disease Registry.

BACKGROUND: The COVID-19 pandemic has evolved through multiple phases characterized by new viral variants, vaccine development, and changes in therapies. It is unknown whether rates of cardiovascular disease (CVD) risk factor profiles and complications have changed over time. METHODS: We analyzed the American Heart Association COVID-19 CVD registry, a national multicenter registry of hospitalized adults with active COVID-19 infection. The time period from April 2020 to December 2021 was divided into 3-month epochs, with March 2020 analyzed separately as a potential outlier. Participating centers varied over the study period. Trends in all-cause in-hospital mortality, CVD risk factors, and in-hospital CVD outcomes, including a composite primary outcome of cardiovascular death, cardiogenic shock, new heart failure, stroke, and myocardial infarction, were evaluated across time epochs. Risk-adjusted analyses were performed using generalized linear mixed-effects models. RESULTS: A total of 46 007 patient admissions from 134 hospitals were included (mean patient age 61.8 years, 53% male, 22% Black race). Patients admitted later in the pandemic were younger, more likely obese, and less likely to have existing CVD (Ptrend ≤0.001 for each). The incidence of the primary outcome increased from 7.0% in March 2020 to 9.8% in October to December 2021 (risk-adjusted Ptrend=0.006). This was driven by an increase in the diagnosis of myocardial infarction and stroke (Ptrend<0.0001 for each). The overall rate of in-hospital mortality was 14.2%, which declined over time (20.8% in March 2020 versus 10.8% in the last epoch; adjusted Ptrend<0.0001). When the analysis was restricted to July 2020 to December 2021, no temporal change in all-cause mortality was seen (adjusted Ptrend=0.63). CONCLUSIONS: Despite a shifting risk factor profile toward a younger population with lower rates of established CVD, the incidence of diagnosed cardiovascular complications of COVID increased from the onset of the pandemic through December 2021. All-cause mortality decreased during the initial months of the pandemic and thereafter remained consistently high through December 2021.

Reproductive Experiences and Cardiovascular Disease Care in Pregnancy Capable and Post-Menopausal Individuals: Insights from the American Heart Association Research Goes Red Registry.

Background: Information on reproductive experiences and awareness of adverse pregnancy outcomes (APOs) and cardiovascular disease (CVD) risk among pregnancy-capable and post-menopausal individuals has not been well described. We sought to evaluate preconception health and APO awareness in a large population-based registry. Methods: Data from the Fertility and Pregnancy Survey of the American Heart Association Research Goes Red Registry (AHA-RGR) were used. Responses to questions pertaining to prenatal health care experiences, postpartum health, and awareness of the association of APOs with CVD risk were used. We summarized responses using proportions for the overall sample and by stratifications, and we tested differences using the Chi-squared test. Results: Of 4,651individuals in the AHA-RGR registry, 3,176 were of reproductive age, and 1,475 were postmenopausal. Among postmenopausal individuals, 37% were unaware that APOs were associated with long-term CVD risk. This varied by different racial/ethnic groups (non-Hispanic White: 38%, non-Hispanic Black: 29%, Asian: 18%, Hispanic: 41%, Other: 46%; P = 0.03). Fifty-nine percent of the participants were not educated regarding the association of APOs with long-term CVD risk by their providers. Thirty percent of the participants reported that their providers did not assess pregnancy history during current visits; this varied by race-ethnicity ( P = 0.02), income ( P = 0.01), and access to care ( P = 0.02). Only 37.1% of the respondents were aware that CVD was the leading cause of maternal mortality. Conclusions: Considerable knowledge gaps exist in the association of APOs with CVD risk, with disparities by race/ethnicity, and most patients are not educated on this association by their health care professionals. There is an urgent and ongoing need for more education on APOs and CVD risk, to improve the health-care experiences and postpartum health outcomes of pregnant individuals.

Research Goes Red: Early Experience With a Participant-Centric Registry.

RATIONALE: Cardiovascular disease remains the leading cause of death in women. To address its determinants including persisting cardiovascular risk factors amplified by sex and race inequities, novel personalized approaches are needed grounded in the engagement of participants in research and prevention. OBJECTIVE: To report on a participant-centric and personalized dynamic registry designed to address persistent gaps in understanding and managing cardiovascular disease in women. METHODS AND RESULTS: The American Heart Association and Verily launched the Research Goes Red registry (RGR) in 2019, as an online research platform available to consenting individuals over the age of 18 years in the United States. RGR aims to bring participants and researchers together to expand knowledge by collecting data and providing an open-source longitudinal dynamic registry for conducting research studies. As of July 2021, 15 350 individuals have engaged with RGR. Mean age of participants was 48.0 48.0±0.2 years with a majority identifying as female and either non-Hispanic White (75.7%) or Black (10.5%). In addition to 6 targeted health surveys, RGR has deployed 2 American Heart Association-sponsored prospective clinical studies based on participants' areas of interest. The first study focuses on perimenopausal weight gain, developed in response to a health concerns survey. The second study is designed to test the use of social media campaigns to increase awareness and participation in cardiovascular disease research among underrepresented millennial women. CONCLUSIONS: RGR is a novel online participant-centric platform that has successfully engaged women and provided critical data on women's heart health to guide research. Priorities for the growth of RGR are centered on increasing reach and diversity of participants, and engaging researchers to work within their communities to leverage the platform to address knowledge gaps and improve women's health.