What is the purpose of the Women’s Health Registry?
The Women’s Health Registry was established to improve knowledge about women’s health for ourselves, our daughters, our granddaughters, and generations beyond. The KWHR now has an an expanded focus on women’s lives and how our experiences influence our health. Changes in electronic access to medical records, health insurance claims data, and other health registries can provide much of the information we have previously collected in KWHR. What is missing from KWHR and other large studies is what happens in the rest of women’s lives. With this relaunch we have a new focus: Bringing Life into Health. The Registry provides the opportunity for you to participate in this research.
If I join the Women’s Health Registry, will I receive healthcare services?
No. Participation in the Women’s Health Registry does not lead to direct access to any medical services or advice, nor does it endorse or provide any medical or healthcare product. If you have any questions about your healthcare, please talk to your doctor.
How is this Registry connected to the University of Kentucky (UK)?
We are a research study that is based at UK. This means that everything that the Women’s Health Registry does is reviewed and approved by the UK Institutional Review Board (IRB) or ethics board. UK faculty and staff conduct all research activities. These individuals are Heather Bush, Ann Coker, and Suann Reese.
Who can join the Women’s Health Registry?
Anyone 18 years and older can join the Registry. You also do not need to be a resident of Kentucky.
Is there a cost for joining the Women’s Health Registry?
There is no cost to join.
Is there a payment for participating in the Registry?
No. You will not be paid to participate. The Women’s Health Registry relies entirely on volunteers. However, your participation in the Registry provides access to research studies that may have research payments or incentives.
What do I have to do to join?
Joining the Women’s Health Registry is easy and takes a few minutes. You just click here, and provide your contact information. Within 2-3 working days, someone from our staff will send you an email with an individual link to a survey. When you have time, you click on this electronic link and answer some survey questions. This survey takes about 20-30 minutes to complete. Before you begin to answer questions we ask that you read the informed consent materials and decide whether you agree to participate.
Do I have to give personal information like my name, email address, and date of birth?
Yes, but we do not give that information to anyone. We need this information for future contact.
Why do I have to agree to a consent form?
This is a research study. The University of Kentucky Institution Review Board (also known as an IRB or Ethics board) approves and regulates all research studies at UK. The consent form outlines the study in detail and lets you know your role and what your rights are as a participant in the study.
What is expected of me?
Once you give your consent, you will be asked to answer some questions on an electronic survey. You’ll be asked basic information like your date of birth, ethnicity, and marital status. You will also be asked to complete questionnaires about your health, lifestyle, and medical history. You do not have to answer all the questions. Our hope is that members will return to the Women’s Health Registry to help us better understand women’s health issues over time.
What happens after I join the Women’s Health Registry?
Your information will be saved and used to identify potential volunteers for future research studies related to women’s health. Your information will also be used for research studies conducted by researchers with a specific interest in Women’s Health.
Is my information confidential?
Absolutely. Your personal contact information is not linked with your survey answers. All survey data and contact information is stored in a secured site, behind a firewall, in password protected databases. The Registry also has a Certificate of Confidentiality issued by the National Institutes of Health, which is issued by the National Institutes of Health (NIH) to protect the privacy of research participants. Under the terms of the Certificate of Confidentiality, The Women’s Health Registry staff cannot be compelled to disclose information that may identify you, even if ordered by a court subpoena, in any federal, state or local civil, criminal, administrative, legislative or other proceedings.
When does the study end?
There is currently no end date. You may decide that you no longer wish to participate or opt to withdraw your consent at any time. If so, you could email us at KWHR. Additionally you could just opt not complete an annual survey.
What if my contact information has changed?
You can update your contact information at any time by emailing the KWHR, or, you will have the opportunity to update your information when you complete the annual survey.
How often will I receive emails from the Registry?
Email is the primary way we communicate with our members. After joining the Registry, you will automatically receive an email within 2-3 business days. This message will include your personal link to participate with the Women’s Health Registry survey. In the future, you may receive periodic requests (no more than monthly) for additional opportunities to complete short surveys or participate in specific research studies.
What do I do if I’m answering a question and don’t see the answer represents me?
Please do your best to select an answer option that best describes your situation. You also have the option to skip or not answer a question that you cannot answer or do not feel comfortable answering.
What if I want to unsubscribe to emails?
You will have the opportunity to unsubscribe from email communication on your annual survey. Annual survey links will be available each year in September.
How can I contact the Registry?