How the Research Goes Red registry for women's heart health enables a participant-centric approach to clinical research

Cardiovascular disease (CVD) is the leading cause of death in women. It also impacts women in ways that are important in the broader context of their health - for example, during pregnancy and menopause. Despite this, women have historically been underrepresented in clinical studies on heart health, and there haven’t been enough studies that focus specifically on heart health in women. The consequences are poorer health outcomes and the further widening of health outcome disparities for women with CVD.

In 2019, Verily and the American Heart Association (AHA) launched Research Goes Red to help address these shortcomings. Research Goes Red is an open-access, longitudinal, dynamic, and participant-centric registry that aims to democratize and personalize clinical research by engaging a diverse population of women as research partners. The initiative aims to position women at the center of clinical research by meeting them where they are - away from the health system - and by proactively investigating their top health concerns, addressing barriers to heart health education, returning results to participants in a thoughtful way, and providing a rich source of relevant real-world data for clinical investigators.

Following more than two years of data collection, the first paper for the Research Goes Red registry, “Research Goes Red: Early Experience With a Participant-Centric Registry,” has now been published in Circulation Research.

This publication highlights how the Research Goes Red registry has successfully engaged women and - with participants’ consent - provided critical data on women’s heart health to help guide research, with the first clinical studies now underway. It demonstrates the feasibility and acceptability of individuals and communities to engage through a novel platform like Research Goes Red, which is promising for the future of women’s health. As of July 2021, over 15,000 women from all 50 states had engaged with the registry.

In addition to six targeted health surveys on topics such as top health concerns and COVID-19, Research Goes Red has deployed two prospective clinical studies based on participants’ areas of interest. The first, the Research Goes Red Weight Study, aims to determine links between perimenopausal weight changes and health outcomes related to CVD in women. The second, the Millennial Women’s Heart Health Study, is focused on the engagement and recruitment of millennial women on social media, with a specific focus on underrepresented women to raise awareness and provide education about heart disease, and increase participation and influence of underrepresented women in cardiovascular research.

This is, indeed, just the beginning. Future priorities for the registry are focused on increasing reach and diversity of participants, and engaging researchers to leverage Research Goes Red for clinical study recruitment and engagement. That said, our early experience suggests that the registry is well-positioned to enable both clinical trial and long-term evidence generation in women’s heart health. This is promising for the development of precision health - for example, the ability to personalize clinical trial enrollment based on a participant’s health profile is a key feature of the Research Goes Red initiative.

At Verily, we’re building out registries focused on specific medical conditions, with the aim to generate inclusive longitudinal data for research in service of precision health. Our partnership with the American Heart Association, and this first publication from the Research Goes Red registry, is one key step on the way to our ultimate goal of achieving precision health and improving health outcomes for all.