What is the Illinois Women's Health Registry? 

Health registries are databases which collect health information about of group of people and identify those who may be interested in participating in clinical research. The Illinois Women’s Health Registry is a type of health registry, designed specifically for women in the state of Illinois.

Why does the Illinois Women's Health Registry exist?

For many years, women were not included in medical research. As a result, we know less about the influences of sex and gender on health and disease. The Illinois Women's Health Registry is trying to change that by ensuring that women have access and the opportunity to participate in clinical research. 

How does the registry work?

Participants are asked to fill out a health questionnaire covering a wide variety of symptoms and conditions, in addition to wellness and lifestyle information. The questionnaire may take between 15 and 25 minutes to complete, depending on a woman’s health status. 

The online questionnaire does not need to be completed in one session; the survey is auto-saved, so participants can come back to the website to complete it at their leisure. 
Women are asked to update their health information once a year. This allows researchers to track health trends in Illinois over time. However, the information will be de-identified, meaning that it will not be associated with your name or contact information. 

Who is eligible to participate?

Any female Illinois resident over the age of 18 is encouraged to participate.

How do I participate?

You can join the Registry by completing an online questionnaire. Click here for a step-by-step guide which walks you through the enrollment process. 

Why should I participate?

  • To join a large group of women interested in women's healthcare issues.
  • To help improve the health of future generations of Illinois women.
  • To make yourself more aware of your own health issues.
  • To help researchers learn more about the factors that affect our health, and in so doing help them improve prevention and treatment of our health conditions.
  • To receive information and updates about key topics in women's health. 
  • To gain access to groundbreaking studies for new medications and healthy lifestyle interventions.

Is my information confidential and where is it stored?

The Registry is a confidential survey.  Under no circumstances will personal health information be released to any third party.  We do not sell contact information or survey responses to external groups such as commercial companies, insurance agencies, hospitals or private physicians.  In addition, we do not consult or compare a woman’s responses to her medical records. The Registry is hosted by Prometheus Research and involves a secure connection, which is the same level of security that is used in banking and healthcare industries.

How often do I need to participate?

We ask that you update your Registry information just once a year. Our newsletters and emails will remind you to do so.

How would I be contacted if I were selected for a study?

When your health information and personal profile match the criteria for a research study, you will recieve an e-mail to let you know that you appear to be qualified to participate in a particular research study. You will be provided a brief summary of the research project and will be given a reasonable period of time to decline the opportunity to be contacted by the researcher or their staff if you are not interested in participating in that particular study.

Do I have to give my contact information?

Yes. The Registry staff needs your personal contact information in order to contact you if you have matched an upcoming research study. This identifying information is only shared with approved researchers once you have agreed to be contacted by the researcher. It is NEVER shared with outside parties (i.e insurance companies, your doctor, vendors, etc).

Who can I talk to if I have more questions? 

You can always call us at 800-984-IWHR or e-mail us at whregistry@northwestern.edu.