Bristol-Gould Sarah, Desjardins Michelle, Woodruff Teresa K
Institute for Women's Health Research, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, USA.
Womens Health (Lond). 2010 Mar;6(2):183-96. doi: 10.2217/whe.10.10.
To achieve the goal of personalized medicine, we must first improve our understanding of the differences in health and illness between men and women. The purpose of the Illinois Women's Health Registry (USA) is to provide a research and education tool that advances scientific knowledge of sex- and gender-based differences in health and disease. Specifically, the Registry is a confidential 30-min health and lifestyle survey for female residents of Illinois over the age of 18 years. The survey includes questions regarding health, environment, health-related behaviors, symptoms and illnesses or conditions that a participant may have now or has had in the past. By enrolling in the Registry, women throughout the state are provided with information and access to clinical research studies that they may be eligible for, based on their self-reported health information. The Registry not only serves as a platform for recruitment into pivotal research studies, but also represents the beginning of a state-wide database that enables researchers to examine the collective de-identified health information provided by women living in Illinois. Ultimately, a cross-sectional and longitudinal analysis of these data will help to clarify the issues that women themselves identify as their main health concerns. In response to these concerns, specific research studies can be designed and launched, allowing us to eventually deliver tailored treatment and prevention options to women. Finally, by creating a reliable state-focused research tool, developed by staff that are trained in women's health research, we can compare health issues across the state and apply strategies for improvement where it is needed most. This article will provide examples of sex differences in disease, the lack of federal enforcement for inclusion of women in studies, researcher-perceived burdens and sex-based reasons as to why recruitment of women is considered to be more challenging. In addition, this article will discuss what a women's health registry is and why we need one in Illinois, how we have recruited women and our successes and challenges. Our goal is to inform the reader about the utility of a state-based tool and to provide a discussion regarding the lessons learned in order to aid other states in implementing this kind of program.
为实现个性化医疗的目标,我们必须首先加深对男性和女性在健康与疾病方面差异的理解。美国伊利诺伊州女性健康登记处的目的是提供一种研究和教育工具,以增进对基于性别差异的健康和疾病的科学认识。具体而言,该登记处是一项针对伊利诺伊州18岁以上女性居民的30分钟保密健康和生活方式调查。调查包括有关健康、环境、与健康相关的行为、症状以及参与者目前或过去可能患有的疾病或状况的问题。通过加入该登记处,全州的女性能够根据她们自我报告的健康信息获得相关信息,并参与她们可能符合条件的临床研究。该登记处不仅是关键研究招募的平台,还代表了一个全州范围数据库的开端,使研究人员能够检查伊利诺伊州女性提供的经过去识别处理的集体健康信息。最终,对这些数据进行横断面和纵向分析将有助于阐明女性自己认定的主要健康问题。针对这些问题,可以设计并开展具体的研究,使我们最终能够为女性提供量身定制的治疗和预防方案。最后,通过创建一个由接受过女性健康研究培训的工作人员开发的、可靠的以州为重点的研究工具,我们可以比较全州的健康问题,并在最需要的地方应用改进策略。本文将举例说明疾病中的性别差异、联邦政府在研究中纳入女性方面缺乏强制执行力、研究人员所感受到的负担以及认为招募女性更具挑战性的基于性别的原因。此外,本文还将讨论女性健康登记处是什么以及为什么我们在伊利诺伊州需要这样一个登记处,我们如何招募女性以及我们的成功与挑战。我们的目标是让读者了解基于州的工具的效用,并就所吸取的经验教训进行讨论,以帮助其他州实施此类项目。
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