Pushing the boundaries of women's health research
Registry
Traditionally, women’s health is discussed in the context of the reproductive system; however, it is increasingly apparent that we lack knowledge regarding the role of sex in all aspects of human biology and medical intervention. In the past, the research community assumed that beyond the reproductive system, differences simply did not exist or were not relevant. The debatable rationale why researchers have preferred male subjects have been: a sense of having to protect vulnerable women and/or a potential fetus, uniformity, avoiding the “complications” of the menstrual cycle, perceived complexity of recruitment, and cutting costs of duplication. Sex- and gender-based approaches to research and medicine frame questions about the differences and similarities in men’s and women’s normal biological, behavioral and social function in combination with their experience of the same diseases. The Institute for Women’s Health Research appreciates the significant role that women can play in their own health and the health of their families. Therefore in March of 2008, the Illinois Women’s Health Registry was created as a friendly gateway between the community and researchers to offer motivated individuals a chance to participate in sex- and gender-based research studies. In so doing we take the recruitment burden off researchers while simultaneously providing women authoritative health information and evidence surrounding the importance of research participation. The goal of the Registry is to provide two-way communication that will ultimately facilitate a better understanding of how and why illnesses develop differently or similarly in men vs. women, how to best treat diseases in women and what women can specifically do to prevent illness.
Specifically, the Registry:
- Is a confidential 30–minute health and lifestyle survey for female Illinois residents over the age of 18. It includes questions about health, environment, health-related behaviors, symptoms, and illnesses or conditions a participant may have now or has had in the past.
- Provides women throughout the state with information and access to clinical research studies that they may be eligible for based on their self-reported health information.
- 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 Illinois women.
- Data can be analyzed to help 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.
