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研究转向红色:以参与者为中心的注册研究的初步经验。

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

机构信息

Departments of Clinical Cancer Prevention and Cardiology, The University of Texas MD Anderson Cancer Center, Houston (S.C.G.).

American Heart Association, Dallas, TX (J.L.H., C.K., P.M., L.M.S., H.M.A., M.J.).

出版信息

Circ Res. 2022 Feb 4;130(3):343-351. doi: 10.1161/CIRCRESAHA.121.320403. Epub 2022 Feb 3.


DOI:10.1161/CIRCRESAHA.121.320403
PMID:35113661
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10505520/
Abstract

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.

摘要

背景:心血管疾病仍然是女性死亡的主要原因。为了解决其决定因素,包括因性别和种族不平等而加剧的持续存在的心血管危险因素,需要基于参与者参与研究和预防的新的个性化方法。 目的:报告一个以参与者为中心和个性化的动态注册系统,旨在解决女性心血管疾病理解和管理方面持续存在的差距。 方法和结果:美国心脏协会和 Verily 于 2019 年推出了 Research Goes Red 注册系统(RGR),这是一个面向美国 18 岁以上同意参与的个人的在线研究平台。RGR 的目标是通过收集数据并提供一个开源的纵向动态注册系统来进行研究,将参与者和研究人员聚集在一起,以扩大知识。截至 2021 年 7 月,已有 15350 人参与了 RGR。参与者的平均年龄为 48.0±0.2 岁,大多数为女性,非西班牙裔白人(75.7%)或黑人(10.5%)。除了 6 项针对性的健康调查外,RGR 还部署了 2 项基于参与者感兴趣领域的美国心脏协会赞助的前瞻性临床研究。第一项研究侧重于围绝经期体重增加,这是对健康问题调查的回应。第二项研究旨在测试使用社交媒体活动来提高代表性不足的千禧一代女性对心血管疾病研究的认识和参与度。 结论:RGR 是一个新颖的在线以参与者为中心的平台,成功地吸引了女性,并为指导研究提供了关于女性心脏健康的关键数据。RGR 的发展重点是增加参与者的覆盖范围和多样性,并让研究人员在其社区内开展工作,利用该平台来解决知识差距,改善女性健康。

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Association between polysocial risk score and CVH among women of reproductive age in the SAFE HEART study: An American Heart Association Research Goes Red Initiative.

Curr Probl Cardiol. 2025-3

[5]
Disparities in awareness and treatment among women with hypertension: Insights from the American Heart Association Research Goes Red Registry.

Am J Prev Cardiol. 2024-6-24

[6]
Design and rationale of the social determinants of the risk of hypertension in women of reproductive age (SAFE HEART) study: An American Heart Association research goes red initiative.

Am Heart J. 2024-9

[7]
Reproductive Experiences and Cardiovascular Disease Care in Pregnancy-Capable and Postmenopausal Individuals: Insights From the American Heart Association Research Goes Red Registry.

Curr Probl Cardiol. 2023-10

[8]
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[9]
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本文引用的文献

[1]
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J Am Heart Assoc. 2021-2

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Circulation. 2021-2-23

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