Research Goes Red: Early Experience with a Participant-Centric Registry

Abstract

Rationale:

Cardiovascular disease (CVD) 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 novel participant-centric and personalized dynamic registry designed to address persistent gaps in understanding and managing CVD in women.

Methods and Results:

The American Heart Association (AHA) 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 US. 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. By July 2021, 15,350 individuals have engaged with RGR. Of the 13,413 persons who completed the initial baseline profile, participants reported a mean age of 47.2 ± 12.1 years with a majority identifying as female and either non-Hispanic white (75.7%) or black (10.5%). In addition to six targeted health surveys, RGR has deployed two AHA-sponsored prospective clinical studies based on participants’ areas of interest. The first study focuses on peri-menopausal 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 CVD research among underrepresented millennial women.

Conclusions:

RGR is a novel online participant-centric platform that successfully engaged many women thereby providing 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.

INTRODUCTION

Cardiovascular disease (CVD) is the leading cause of death and disability in the United States.^{1, 2} For both women and men, traditional risk factors (e.g., diabetes, hypertension) play a major role in the burden of CVD,² often compounded by adverse social determinants of health.³ However, there are risk factors specific to women such as pregnancy-related complications, post-menopausal status; further physical and emotional stress, and sleep quality have been recognized as playing a central role in the genesis of CVD in women.^{2, 4, 5} The clinical presentation of overt heart disease exhibits sex-specific patterns and concerns for biases in its management have been raised since the 1990’s.^{6, 7} In the last 10 years, the knowledge of heart disease as a leading cause of death amongst the general population has decreased, most notably among race/ethnic minorities and younger women and disparities remain pervasive.^{4, 8}

Almost thirty years ago, the American Heart Association (AHA) recognized the importance of focusing on women’s risks of heart disease and overall cardiovascular disease (CVD) and the urgent need for deliberate strategies to prevent and treat CVD in women.⁹ Over the next 3 decades, the AHA sustained its commitment and advocacy to prevent CVD (1997-2011)^10-13 and launched the Go Red for Women campaign in 2004 to increase awareness of heart disease risk in women. In 2015, the AHA started the Go Red for Women Strategically Focused Research Network (SFRN) to study CVD risk in women while accounting for the sex specificity of the genesis, presentation and management of CVD.⁵

With the aid of expert volunteers, AHA leadership conducted a critical assessment of the research and clinical knowledge of CVD across the US population and specifically within women to establish new goals and programs to address persistent gaps. To directly address the needs of women, the AHA launched the Research Goes Red registry (RGR) in collaboration with Verily’s Project Baseline. Project Baseline is an effort to democratize and expedite evidence generation in clinical research.¹⁴ Established in 2019, RGR is a novel online platform designed to be participant-centric and highly customizable and scalable. It positions women at the center of clinical research processes to accelerate scientific discovery by fostering active engagement. Our goal herein, is to report on the first 2 years of experience of RGR. We will review the demographics and health concerns of participants to date and delineate future direction for research, participants engagement and advocacy collaborations.

METHODS

Registration and Consent

Individuals register for RGR from the Project Baseline website (projectbaseline.com). The website and Clinical Studies Platform are provided by Verily. The initial step prompts the individual to log into a secure account, and the provided email address is used to notify individuals of new studies and opportunities and to share Project Baseline updates. Participants in RGR are members of the Baseline Community Study. RGR is an initiative within this larger Baseline Community Study that shares resources and engagement opportunities. Each member’s portal has specific RGR content and graphics including a welcome banner, news, and updates, RGR specific opportunities specific engagement opportunities.

Following registration, an individual can review an online consent form that provides detailed information. The study inclusion criteria include the following: over the age of 18 years, a resident of the United States, able to speak and read English, and willing to comply with all aspects of the protocol. Individuals that provide an affirmative consent are asked to participate in a short questionnaire. Once the short questionnaire is complete, individuals can log into the RGR member portal.

Included in the questionnaire are two specific questions around ethnicity and race. Specifically, participants are asked an initial question if they are of Hispanic Ethnicity. The possible answers include Yes, No, and don’t know. Participants are asked a second question, “Which race(s) do you identify with?” and are asked to select all options that apply. Options include American Indian or Alaska Native, Asian, Black, or African American, Native Hawaiian or Other Pacific Islander, White, Other. Based on participants answers to these two questions, we derived an Ethnicity Race Variable. The derivation of this variable was performed as follows: all participants who select ‘Yes’ to the initial question of if they are of Hispanic ethnicity are counted as ‘Hispanic’ regardless of what they’ve answered in question 2. We then assign participants who have selected more than one option in question 2 as ‘Mixed’. For people who have selected ‘No’ or ‘I don’t know’ to question 1 and selected just one option in question 2, we assign them the same race they’ve selected, such as ‘Non-Hispanic White’, ‘Non-Hispanic Asian’, etc. Participants who have not selected any race are also assigned to the ‘Mixed’ category.

Recruitment

Individuals are recruited through several methods such as Institute Review Board (IRB)-approved advertisements, registries, care provider recommendation, and community events. To date, recruitment has focused on digital campaigns, leveraging of AHA/Go Red networks and pilot recruitment campaigns. Our recruitment strategies are agile, targeted and directed towards specific individuals. The goal is for the RGR cohort to mirror the US population. Additionally, clinical centers may perform a health record review and recruit potential volunteers. Volunteers are directed to visit the website or a study phone line (“Call Center”) to learn more about the study.

Individual Engagement

Everyone who consents can learn about new health surveys and research studies through the RGR member portal as well as email. “Participants have access to several “evergreen surveys”, i.e., surveys that remain open to all new participants. These surveys include topics focused on greatest health concerns, experiences, and perceptions in accessing the healthcare system and reproductive health. Other surveys are only open for a specific period. These include surveys focused on emotional changes caused by the COVID-19 pandemic, experiences with COVID-19, and COVID-19 diagnosis and vaccination rates. Participants can access surveys via their portal or through email. For example, when a new survey is launched, each participant receives a dedicated Research Goes Red email announcing the new survey and inviting participation.” 96% of participants that started an RGR survey, completed the survey. The average time to complete an RGR survey was 4.3 minutes with a range of 0.8 – 6.6 minutes. We plan to continue to stand up timely and relevant surveys, openly recruit for studies from within the platform and ensure we’re communicating and returning results to the participants upon completion/closing of surveys. It will be important for us to stand up engagement opportunities on a regular basis as well provide information back to participants that they’ve indicated are important to them. The health-related concerns of women survey were used to help identify topics for the first AHA funded research studies to engage RGR participants using Verily’s Clinical Study Platform. To access the surveys please sign into the Precision Medicine Platform and navigate to the data menu, data documentation and RGR.

Data Capture and Monitoring

Aggregated and anonymized results from surveys are shared with all consented individuals. Individuals are encouraged to personalize their profile to be best matched with research opportunities that fit their specific health status and history. RGR currently includes data elements that are collected from consented and enrolled participants.

A de-identified copy of the data is encrypted and transferred to a secure workspace on the Precision Medicine Platform. Data processing, harmonization and analysis is then conducted by an approved data science team at the AHA. An overview of the aggregated de-identified data and corresponding data documentation is available online on the American Heart Association Precision Medicine Platform, which also includes resources to analyze and interpret the data. This open approach is consistent with the FAIR (Findable, Accessible, Interoperable and Reusable) guiding principles for data management.¹⁵ AHA maintains an audit process enabling comprehensive review of submitted data for compliance.

Research Goes Red Scientific Advisory Group

Research Goes Red is guided by a distinguished Science Advisory Group comprised of volunteer experts across multiple disciplines including cardiology, neurology, epidemiology, cancer, obstetrics and gynecology, cardio-obstetrics, genetics, preventive medicine, data science and more. Guided by a volunteer principal investigator, the Science Advisory Group is further delineated into three subcommittees that are each overseen by two subcommittee co-chairs. The three subcommittees include: publications, engagement, and communications, which provide strategic guidance into approaches around scientific communications and professional society support, participant recruitment, in-platform engagement, surveys and clinical study recommendations, data governance, and publication development and management. Operationally, Research Goes Red is overseen by the AHA’s Chief Medical Officer and Chief of Data Science with support from AHA’s Precision Medicine Platform, Quality, Outcomes Research & Analytics and Consumer Health teams.

The scientific community can utilize RGR data to formulate hypotheses and propose manuscripts to conduct women’s heart research. Proposals are reviewed by the AHA Science Advisory Board publication subcommittee. For approved manuscript proposals, a secure virtual workspace within the AHA Precision Medicine Platform is available for the research investigator to perform statistical analyses to within the RGR survey datasets. To find out more information about the data elements, surveys, and how to submit a manuscript proposal to the RGR publication committee, please sign into the Precision Medicine Platform and navigate to the data menu, data documentation and RGR. Researchers from across all sectors may apply.

RESULTS

As of July 28, 2021, 15,350 individuals have engaged with Research Goes Red.

Self-reported demographic data health conditions of RGR compared to US population estimates

Table 1 provides the baseline demographic data and the cardiovascular history of the 13,413 individuals consented into the RGR community and the general U.S. adult population. These data are presented alongside with U.S. population self-reported estimates. The average age of the cohort was 47.2 ± 12.1 years. Most participants identified as non-Hispanic white (75.7%) or black (10.5%). All fifty states are represented in RGR; the highest proportion of participants are from Texas (6.9%), Ohio (6.6%), and California (6.4%) (Figure 1). A prior history of myocardial infarction (“heart attack”) and stroke was reported in 5.6% and 2.2% of participants, respectively; these frequencies equate to 752 participants with heart attack and 301 participants with stroke. Table 2 depicts the prevalence of self-reported health conditions compared to self-reported US population estimates. The most frequently reported health conditions were hypertension (25.9%), anxiety (15.7%), and thyroid-related conditions (14.6%). Altogether, the prevalence of self-reported chronic conditions in the RGR cohort are qualitatively like those of the US population.¹⁶

Table 1:

Research Goes Red Participant Demographics and Cardiovascular History, n=13,413

Participants	Percent (%) or Mean ± SD	U.S. Population* 328,239,523	U.S. Population* 166,650,550 Females
Sex at Birth
Female	99.2%	50.8%	100.0%
Male	0.7%	49.2%	N/A
Intersex	0.1%	N/A	N/A
Age (median ± SE)	48.0 ± 0.2	38.5± 0.01	39.8 ± 0.01
Race and Ethnicity
Non-Hispanic White	75.7%	60.1%	60.0%
Non-Hispanic Black	10.5%	13.4%	13.8%
Hispanic	7.0%	16.2%	15.8%
Non-Hispanic American Indian or Alaskan Native	0.5%	1.3%	1.2%
Non-Hispanic Mixed	2.9%	2.8%	2.8*
Non-Hispanic Asian	2.5%	5.9%	6.1%
Non-Hispanic Other	0.7%	N/A	N/A
Non-Hispanic Native Hawaiian or Pacific Islander	0.1%	0.2%	0.2%
Heart attack/stroke in last 10 years
Heart attack	5.6%	6.7%†	6.2%†
Stroke	2.2%	2.5%††	2.6%††
Heart and stroke	0.6%	N/A	N/A
Income
Less than $10,000	2.4%	5.5%	N/A
$10,000 - $24,999	6.1%	12.6%	N/A
$25,000 - $34,999	6.8%	8.1%	N/A
$35,000 - $49,999	9.7%	11.6%	N/A
$50,000 - $74,999	17.0%	16.5%	N/A
$75,000 - $99,999	15.5%	12.2%	N/A
$100,000 - $149,000	19.5%	15.3%	N/A
$150,000 – $199,999	9.2%	8.0%	N/A
$200,000 and above	7.9%	10.2%	N/A
Prefer not to answer	5.9%	N/A	N/A
Education
Never attended school	0%	N/A	N/A
Secondary school (Grades 5-8)	0.2%	3.5%	3.4%
Some High School (Grades 9-11)	0.6%	5.5%	5.2%
High School Graduate (Grade 12 or GED)	6.7%	27.6%	26.1%
Some college or technical school (1-3 years)	31.9%	15.2%	15.4%
College Graduate (4+ years)	31.9%	34.0%	35.3%
Advanced degree	28.5%	14.1%	14.5%
Prefer not to answer	0.2%	N/A	N/A

^*Source: U.S. Census Bureau American Community Survey Data (2019). (Census, gender, and Age - Table S0101 https://data.census.gov/cedsci/table?q=age&tid=ACSST1Y2019.S0101³⁰; Race and Ethnicity – Table NC-EST2019-ASR6H; https://www.census.gov/newsroom/press-kits/2020/population-estimates-detailed.html³¹; Household income – Table HINC-01 - https://www.census.gov/data/tables/time-series/demo/income-poverty/cps-hinc/hinc-01.2019.html unless otherwise indicated; N/A indicates data are not available.

For educational attainment level, we also pulled those data from the Census ACS 2020 self-report data – table 2 available https://www.census.gov/data/tables/2020/demo/educational-attainment/cps-detailed-tables.html

^†Prevalence of myocardial infarction in U.S. adults ≥20 years (2013-2016)²

^††Prevalence of stroke in U.S. adults ≥20 years (2013-2016)²

Figure 1. State by state visualization of Research Goes Red participants.

Colors in the figure legend respond to number of participants.

Table 2:

Self-Reported Medical Conditions by Research Goes Red Participants, n=10,220

Medical Condition	RGR	Prevalence in U.S. adults ≥18 y (2019)*	Prevalence among U.S. adults ≥18 y (2019)* Females
High blood pressure	25.9%	27.0%	26.9%
Anxiety	15.7%	11.1%	13.7%
Thyroid-related condition	14.6%	N/A	N/A
High Cholesterol	13.0%	20.1%	19.5%
Depression	12.8%	4.7%	5.5%
Arthritis	12.8%	21.4%	24.3%
Diabetes	12.6%	9.3	9.3%
Migraine	12.0%	N/A	N/A
Asthma	11.6%	8.0%	9.8%
Allergies	8.4%	N/A	N/A

^*Source: National Center for Health Statistics. Interactive Summary Health Statistics for Adults — 2019. National Health Interview Survey. Generated interactively: Oct 26 2021 from https://wwwn.cdc.gov/NHISDataQueryTool/SHS_2019_ADULT3/index.html for self-reported Diagnosed Hypertension, Regularly had feelings of worry, nervousness, or anxiety, High Cholesterol, Regularly had feelings of depression, Arthritis diagnosis, Diagnosed diabetes, and Current asthma.¹⁶

Responsiveness to the health concerns survey

Participants were asked what they considered to be the important health topics and shared the following as highest priority: access to health care (15.1%), body weight (14.1%), and memory/ brain function (10.3%). Non-Hispanic whites (n=4144) reported access to health care (15%), body weight (14%), and memory/brain function (10.3%) as top concerns while blacks (n=468) reported access to care (17.9%), body weight (17.7%), and high blood pressure (8.5%) as the top health concerns. Response to the health concerns survey differed by age category (Figure 2). Mental group, anxiety and stress, and weight were top concerns along with access to care and medications. With increasing age (> 60 years), memory and brain function became a top concern, along with access to care and body weight.

Figure 2. Topics most important to Research Goes Red participants by age category.

Research Studies

The RGR platform is currently used in AHA funded research studies: The Weight Study and Millennial Women’s Heart Health Study. Body weight was identified as a top concern of RGR participants; thus, AHA funded its first research study in this area. The Millennial Women’s Heart Study was funded by AHA to address the gap in awareness of heart disease and participation in research by young Millennial Women with a specific focus on underrepresented groups.

The RGR Weight Study is a prospective observational study to determine links between weight changes and novel physiologic and behavioral outcomes related to CVD in women. The study, a collaboration between AHA and Verily, leverages the existing expertise and infrastructure of the AHA Go Red for Women SFRN.⁵ The study is conducted primarily remotely; online questionnaires are completed via the Trialkit app and the RGR website landing page, developed and tailored to optimize the experience for research participants. Participants log their waist circumference, body composition via scale, and home blood pressure via the app. An in-person visit to a local LabCorp facility is required to obtain blood samples and blood pressure measurements. Procedures are in place for the PWN Health platform to manage the test request and return of lab results process for study participants. All data and electronic consents collected on the Trialkit app are synced into the AHA-Verily online platform for investigators to download files with coded data, in real-time. This study will be the first of its kind to demonstrate the feasibility of collecting data from the RGR registry in a decentralized way, with a focus on body weight, a top healthy priority for women who have enrolled in the RGR registry.

The Millennial Women’s Heart Health Study is focused on the engagement and recruitment of millennial women (defined as those born between 1981 and 1996) on social media, with a specific focus on underrepresented millennial women to: 1) raise awareness and provide education about heart disease and 2) increase participation and influence of underrepresented women in cardiovascular research. Verily’s Clinical Studies Platform allows for a centralized process to streamline the consent process, enrollment, and data collection. The goal is to consent new participants to RGR through a mobile device or a computer. Participant engagement is tracked in the social media platform. Essentially, participants are passively tracked to see what they click on to help better understand the engagement and recruitment process. Data elements from responses to social media posts are collected through Verily (i.e., which heart healthy posts are being viewed most frequently) to track success of specific content and influencers. Given the unique attributes of social media, it is expected that over 4 million women will have some exposure to women’s heart health information and 2000 women will consent to RGR-related research because of the Millennial Women’s Heart Health Study. This study will provide key information regarding the use of social media to reach and educate millennial women, with the goal to prevent heart disease in this vulnerable demographic. The overall goal of this study is to increase our diversity ratios for both younger, Black, and Hispanic women This study will be specifically engaging multiple diverse networks and influencers including Black Girls RUN! - a national organization that encourages African American women to make fitness and healthy living a priority and WeAllGrow Latina, which is one of the largest and best-established networks of Latinas online, of which Go Red for Women has been a national partner previously.

DISCUSSION

The overarching goal of the AHA-Verily RGR collaboration described herein is to contribute to reduce the persisting burden of heart disease in women and improve their heart health by deploying a participant-centric, personalized approach that expands the engagement of women in research and enables researchers to leverage the RGR platform to address gaps in science. To deliver on these goals, RGR was designed to provide a new way to reach individuals and engage communities in research focused on women’s heart health issues.

The first two years of activity within RGR demonstrate our ability to do so and provide important information on the feasibility and acceptability of this method of engagement. Over this short time, we have demonstrated the feasibility of utilizing an online, secure platform powered by Verily to collect demographic information, self-report medical history, and to field new surveys on topics such as the health concerns of women and COVID-19.

During these two years, 15,350 women across the United States have consented to participate in RGR. In addition, the RGR has been responsive to ongoing data collection needs and has been deployed in two large scale research studies. One study is focused on peri-menopausal weight gain, a top health concern of participants, while the other study is focused on increasing awareness of heart disease risks and promoting higher participation rates among younger women using social media.

Participants’ concerns and self-reported health conditions

Access to and paying for health care and/or medications was a top concern for both white and black respondents across all age groups. Historically, women have higher health service use compared to men, though have a higher risk of unmet health care needs;^{17, 18} thus, concerns over lack of access or resources to pay for health care for women is highly relevant given a universal health care model has not been adopted in the US. Several factors likely play into this concern including: 1) a volatile economic environment due to COVID-19; 2) changes in the political climate and healthcare policies in the US; and 3) concern over the living environment and impact on health and well-being. However, many factors remain unknown, providing opportunity for more detailed research using the RGR platform. The same holds for the variation in response to health concerns based on age group. Understanding the mental health concerns prevalent among younger respondents will be critically important moving forward and can be addressed and followed through RGR.

Body weight was a top concern among RGR participants, a concern shared by clinical medicine and public health, as obesity is now prevalent in over 42% of women in the US population, a staggering increase from 30.5% in 2000.¹⁹ Obesity is a complex condition that includes many interacting signals including the neuroendocrine system as well as behavioral choices (diet and exercise) linked to social determinants of health, sex and gender, genetics, work/life demands and stress, and well as race/ethnic differences in body size perception.^20-24 Because of the large behavioral components to the obesity epidemic, personal engagement is essential to address it and the congruence between societal and individual concerns as documented by RGR should provide some hope that solutions can be delineated.

It is worth underscoring that the most frequent self-reported health condition among participants was hypertension. Because excessive weight increases the risk of hypertension (as well as diabetes, and pregnancy complications), it stands to reason that addressing the major concern of participants will also address their most frequent (at least by self-report) health concern.

As a leading cause of years life lost,²⁵ hypertension is a key modifiable risk factor for CVD and a major cause of age-related cognitive impairment,²⁶ a concern also mentioned by RGR participants. Given recent trends in mortality attributed to hypertensive heart disease,²⁷ there is a clear urgency to improve blood pressure management to minimize deleterious end organ damage. RGR can use the Verily Clinical Platform to design and conduct specific blood pressure related research studies by both recruiting new participants at risk of /or with hypertension or recruiting individuals already participating in Research Goes Red that are at risk of hypertension or already hypertensive. Addressing racial disparities in hypertension awareness, treatment, and control, would be an area of major importance for black women who have the highest rates of hypertension compared to all other race/ethnic groups,²⁸ and based on the RGR survey, report hypertension as a top heath concern.

Research utilization of RGR

Over the last 10 years, the knowledge that heart disease is the leading cause of death, has decreased especially among younger women,⁴ an observation particularly disturbing given recent adverse trends in CVD mortality.²⁷ RGR use of an innovative participant-centric communication approach uniquely positions the registry to address gaps and barriers to cardiovascular health education, while in parallel, perform cutting-edge research.

There is great opportunity for investigators to partner and work within the RGR platform. As an open-access registry, the data elements collected under the auspices of RGR are available to scientists and scholarly clinicians at all career stages to conduct studies and generate preliminary data for grant applications.

As a longitudinal study positioned to deploy serial surveys and studies on key health topics, RGR has the potential to become a powerful tool for investigators to study life course epidemiology and deploy community interventions. As proof of concept, the first weight management-focused observational study is underway in peri-menopausal RGR participants using Bluetooth-enabled scales and community blood laboratories through a Verily-LabCorp agreement. A second clinical study is also being conducted, leveraging social media platforms, to engage younger, underrepresented women in research, education, and to better understand their views on women’s heart health. Taken together, the Verily Clinical Studies Platform is well-positioned to enable both observational and clinical trials for investigators to uncover novel findings and engage more women in heart health research. The ability to personalize clinical trial enrollment based on the participants’ baseline health profile and prevalent chronic conditions is a distinct advantage of RGR.

Lastly, each of us can get involved in RGR research in our respective communities by sharing the RGR link (https://www.projectbaseline.com/studies/gored/) with our clinic patients, our friends, and neighbors, and to colleagues to promote research opportunities and gain new knowledge to ultimately reduce the risk of heart disease in women.

Future directions, Reach, and Impact

Future directions of RGR include improving engagement of diverse populations, quality and patient centered research, as well as promoting educational initiatives to participants. The RGR is taking the following steps to enhance participation and reach by: 1) promoting topic-specific (e.g. Weight study) recruitment campaigns through both local and national AHA markets; 2) increasing digital efforts through social media to increase participation of in the research process; 3) expanding role of volunteers to promote these research initiatives as “citizen scientists”; and 4) creating geographically focused recruitment campaign leveraging local community interests in particular RGR surveys and topics (i.e., reproductive health). In addition, expansion to participants who are otherwise underrepresented is a top priority, as evidenced by our commitment and support of the Millennial Heart Health study, to better understand the concerns and improve research access to underrepresented populations. Finally, one key aspect of the strategic vision for RGR is its use for clinical trials. This is particularly important given the chronic underrepresentation of women in clinical trials, which despite being known for decades, remains largely unchanged. For example, an investigator planning a study on one manifestation of heart disease can identify women interested in participating in research via RGR, identify those who carry the putative diagnosis of interest, define approach for screening for final inclusion criteria and once eligibility is confirmed, randomize participants through the platform and leverage for follow up and ongoing communication with trial participants to optimize retention.

In summary, the AHA is committed to advancing cardiovascular health for all, including identifying and removing barriers to health care access and quality. The RGR-Verily collaboration is one example of how the AHA is striving to make a positive impact in health and well-being for women’s heart health.

Limitations and strengths

As a voluntary registry, RGR is inherently subject to participant bias and individuals concerned by health issues and with access to and comfort with technology are likely over-represented. Reading and speaking English is also part of the study inclusion criteria. We now offer information about RGR in Spanish to better address the limitation of a current underrepresentation of Hispanic individuals Please see Research Goes Red information is available in Spanish on Go Red for Women’s website. The majority of the participants are middle-aged, white, and located in several distinct areas of the US. To help address this, a major goal of RGR includes increasing diversity in age, racial/ethnic, and geography of participants, as described.

As a participant-centric registry, the data are collected through self-report, which will by design differ from a health system centric view of health and disease. These two perspectives are complementary. Depending on the condition under consideration and the intended use (e.g., clinical trial enrollment for example), some diagnoses may require validation. Importantly, for hypertension, data from the National Health and Nutrition Examination Survey (NHANES) which is the main data source for hypertension surveillance, document the validity of self-reported hypertension against direct measures. Further and directly relevant to RGR, the reliability of self-report was greater in women than in men.²⁹

CONCLUSION

Since the AHA launched RGR in collaboration with Verily, RGR participants have provided valuable data regarding women’s heart health to guide future research priorities. As RGR grows, increasing participant diversity will be critical to build a registry and community representative of the US population and to reach 2024 AHA impact goals. Strategies to promote engagement and retention within RGR communities and building relationships with academic, government, and industry partners will also be critical to the AHA mission of improving the lives of all women. In doing so, RGR will help build the next generation of investigators focused on women’s heart health research.