Participant Frequently Asked Questions (F.A.Q.)
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 a questionnaire (either online through our secure web-site).
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 from specialty physicians and researchers from our periodic newsletters.
• To gain access to groundbreaking studies for new medications and healthy lifestyle interventions.
Is my information confidential and where is it stored? Yes, absolutely. We utilize the same level of secruity used for banking and healthcare websites. Your information is never given to physician, insurance company, vendor, etc.
Should I be worried about confidentiality when filling out the online survey? No. The survey operates from a secure website located in Registar under Northwestern University Biomedical Informatics Center (NUBIC).
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.
What if I don’t have a computer or an email address? You can call us at 800-984-IWHR and we will send you a paper copy of the survey along with a prepaid return envelope. We will contact you each year to update your Registry information.
What happens to my paper survey after my information is stored in the database? Once we have secured your information in our database we destroy your paper survey. We only retain the paper copy of your consent forms.
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, the Registry staff will send you a letter telling you 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).
You can always call us at 800-984-IWHR with other questions.