Help Advance Women's Health Research!

I honestly can't bring myself to write about the DHHS rules...Instead I will ask my Illinois readers to participate in a POSITIVE action about women's health. I know it's long, but if you live in Illinois, please take a few minutes to read about a women's health registry that needs your input (emphasis below is mine, but the words are from the project):

Let’s face it, as women we are usually the ones who make healthcare decisions for ourselves and our families. The more we know, the better choices we will make. So ask yourself….have you ever wondered why certain diseases affect men and women differently? Why some diseases and conditions are more common in women? Or why men and women may react differently to the same medications? The reasons behind the worrisome facts are even more disturbing. If we’ve got you thinking about it now—that’s just what we hoped would happen!

When it comes to health, there are many important differences between men and women; to further complicate things, race and ethnicity can add another twist. In fact, researchers are finding that certain breast cancers affect African American women more often then women of other races. The differences in men’s and women’s bodies and medical needs are numerous – women have a longer time interval between heartbeats, are more likely to suffer from depression and insomnia, are more susceptible to autoimmune diseases, and experience different symptoms when suffering a heart attack. Sadly, the healthcare women are receiving today is based on research that was conducted primarily in large populations of men, even if the treatment will be offered to both male and female patients. Historically, women were not included in research trials; it was not until 1993 that a federal law was passed to ensure that women and minorities were included in all human subject research. This is probably surprising to hear. We know, and fortunately scientists and doctors are learning that what benefits men isn’t necessarily the best approach for women. The more we learn, the clearer it becomes that in order to ensure equality of care for all women, it is important that our research efforts represent the full diversity of women. Enrolling only male subjects in clinical trials has sweeping consequences for women everywhere.

The difficulty researchers sometimes have recruiting women for a study is not because of lack of interest or willingness to help. In fact it’s often due to lack of information and access. That’s why the Institute for Women’s Research at Northwestern University decided to develop the Illinois Women’s Health Registry. By enrolling in the Registry women throughout the state will be provided with information and access to research studies and clinical trials they may want to join. Equally important is that your de-identified information will also contribute to a longitudinal demographic study that will help identify community health priorities and accelerate new treatments to the public.

When Institute staff originally began thinking about better ways to include more community women in research their efforts led them to the Kentucky Women’s Health Registry. With guidance from the University of Kentucky’s Center for the Advancement of Women’s Health, it became clear that by working together we could build a significant database containing information on the status of women’s health which could become a model for all states. There is great potential in determining if the health profiles of Kentuckians are the same as for Illinois women. Comparing states could result in very valuable information. Unfortunately, women’s health status in both Kentucky and Illinois is poor based on 27 health status benchmarks developed by the U.S. Department of Health and Human Services. In the 2007 edition of “Making the Grade on Women’s Health: A National and State-by-State Report Card,” Illinois ranked 33 and Kentucky 46 (with “1” being the healthiest), indicating that on a national basis, our states rank unacceptably low and are not meeting the health needs of women. Specifically, one benchmark analyzed and given a failing grade is the percentage of obese women in each state, Illinois coming in at 26.3% and Kentucky 28.8%. These troubling percentages have increased since 2004, and often lead to other serious health consequences such as diabetes, high blood pressure and cardiovascular disease. On the contrary, one benchmark ranking satisfactory marks is the percentage of women age 40 and older that have had a mammogram within the past 2 years (76.1% in Illinois and 75.6% in Kentucky). Overall the number of women who get mammograms is increasing and this is important to help detect breast cancer in its early stages. Both states need to make a substantial commitment to reaching other national goals for the health and well-being of women.

The Registry is a 30 minute health questionnaire, available online or as a paper version, for female Illinois residents over the age of 18. It includes questions about your health, environment, health-related behaviors, symptoms, and illnesses or conditions you may have now or have had in the past. We are resolute in protecting your confidentiality and your information. If your profile matches a research study’s criteria, we will contact you and offer you the opportunity to participate. If you do not decline, you will be contacted by the researcher for further screening and other study details.

You might be asking, what’s in it for me? There are so many reasons to enroll! You will:

• improve women’s healthcare today and for future generations;
• gain access to groundbreaking research studies;
• learn more about your own health issues;
• help researchers learn more about the things that affect our health so they can better assess and tailor new treatments;
• help improve prevention and treatment of certain diseases and health conditions;
• receive important information in our newsletters.

If you haven’t already, come on, join us in making a change! Become part of the solution by committing to increase knowledge about women’s health for ourselves, our spouses, our daughters, our granddaughters and future generations. Please sign up today and help spread the word!

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