Frequently Asked Questions
What is WEAR in Oregon?
The acronym stands for Women Engaged in Advancing Health Research. Although the main goal is to investigate heart disease and blood cancer development, we will also conduct studies to advance breast cancer and other health research. Be assured that your participation in this research will have long-term and widespread impact in many research projects that focus on improving health.
Why is my participation important?
The results of this study will be used to help physicians and scientists better understand the risk factors associated with the development of heart disease and blood cancers. This will aide in identifying at-risk individuals earlier, and in the future, perhaps even provide treatment before the disease has fully developed. Moreover, the data gathered from your participation may also be used to further research in the areas of breast cancer and other diseases.
What does participating require? How long will the study last?
- We will ask you to submit a blood sample every 1-2 years over the span of approximately 10 years. We will alert you to blood draw opportunities in the community through notices sent by email.
- We will ask you to complete a health questionnaire at the onset of the study, which should take you no more than 30 minutes to complete. This questionnaire will ask questions pertaining to your medical history. It will also ask you to provide contact information (address, email, and phone) for three friends or relatives, in case we lose contact with you during your involvement in the study. We suggest you have this ready before you consent and fill out the health survey. Updates on health will occur through:
- Health update questionnaires provided online every year after the initial questionnaire. These will take less than 30 minutes of your time and will primarily seek to determine what, if any, changes have occurred in your health over the last year.
- If you had a heart attack or stroke, or a new diagnosis of any cancer, you can contact our team directly at any time to provide this update. We will verify the diagnosis through review of your medical records.
- There is no treatment advice or treatment proposed during this phase of the study.
What are the potential benefits of participating?
Participating in this study will not have any direct benefits to you, but your contribution will help further our understanding of these acquired genetic risk factors and may contribute to the development of early detection and treatment strategies in the future. Your participation may help us learn how to improve the health of many people.
Who is participating in this study?
The women in this study will be 65 years of age or older, have no previous history of cancer, and live in Oregon or Vancouver, Washington metropolitan area. Our goal is to have as many as 15,000 women across Oregon/SW Washington will take part in this study.
How does the selection process work?
If you are interested in being involved in this study and are 65 years of age or older and have no previous history of cancer, you are encouraged to fill out the screening survey. If you meet the eligibility criteria of the study, you can proceed with reviewing the consent form and providing consent online, if you so choose.
Will my information remain private?
Yes! All identifying information will remain strictly confidential. Your identity and the identity of your friends and family members will be protected fully during the course of this study. All databases are secured and locked-down. No information is shared with your doctor or your health insurance, as this is for research purposes only.
Is there a cost associated with the study?
No, there is no cost to you to join the study.
If I do not meet the study criteria. Are there other ways I can help?
Yes! If you live outside of Oregon/SW Washington, if you are a male, younger than 65, and/or have a history of cancer, you can still contribute to this study in the following ways:
- Tell other Oregon and SW Washington community members (friends, family, coworkers) about this study and encourage them to visit our website and take the screening survey.
How do I withdraw from this study?
You are free to withdraw from this study at any time for any reason, simply send an email to the WEAR study team (email: email@example.com) with your full name and subject number and write "withdraw from study" in the subject line. We will then send you a withdraw questionnaire to learn more about why you are choosing to discontinue your participation.
Am I eligible to participate if I have/had melanoma?
Unfortunately, you do not qualify to enroll in the study if you have or have had melanoma or a history of cancer but there are other ways you can help! Tell other Oregon and SW Washington community members about this study and encourage them to visit our website and take the screening survey.
Am I eligible to participate if I have/had squamous or basal cell carcinoma of the skin?
Yes, you are eligible to participate.
Am I eligible to participate if I have already had a heart attack or stroke?
Yes, you are eligible to participate.
Geography Concerns-I do not live near Portland, Oregon
What if I live far away from Portland or other community blood draw sites? What options do I have if I am unable to make it to my yearly/ever other year blood draw?
We understand that it may be difficult for you to travel long-distances to Portland or other community blood draw sites to have your blood drawn on a yearly (or every other year) basis. Therefore, we are working towards holding blood draw drives throughout the state of Oregon. We hope that at least once a year there will be a blood draw drive a reasonable distance from your home. We are also considering a mailing option in the future, so that you can mail us your blood sample.
What if I only live part time in Oregon or SW Washington? Am I still eligible to join the study?
Yes! As long as you live, on average, 6 months or more out of the year in Oregon or SW Washington you are eligible to participate in the study.
I am Enrolled in the Study and had a Recent Health Event
How can I update the WEAR in Oregon study team about a new health issue before my yearly survey?
If you would like to update the study about a new major health development before your yearly survey (you have been diagnosed with a new heart attack, stroke, or cancer), send an email to the team (email: firstname.lastname@example.org) with your full name telling us what changes your doctor found and write “health update” in the subject line. The study team will review this updated information and send a link so that you can provide the information via the online survey system.
Blood Draw Drives
Can I have my blood sample collected at my primary care provider's office?
Unfortunately, this is not possible right now. The blood sample required for this study cannot be billed to your insurance, so it needs to be drawn at a WEAR study-sponsored blood draw drive.
I was invited to a blood draw drive but could not attend. Will I be invited again?
Yes, if you cannot attend the event to which you were invited, please respond accordingly to your invitation. The WEAR study team will invite you to another drive. Remember, you only need to submit a blood sample every one to two years, so there will be plenty of opportunities.
I was invited to a blood draw drive but it is not in my immediate area—what do I do?
If the event you were invited to is not at a convenient time or location for you, you can decline the invitation. We will eventually invite you to another blood draw drive, hopefully within a reasonable distance from your residence. Alternatively, if you know that you will be in the Portland metro area during a specific time, you can email the WEAR study team to learn about attending a drive during the weekend that you are in town.
Will you release my results?
At this time, since we do not know the exact health risks and optimal monitoring/treatment plan for these mutations, we are not releasing results to individuals.
Initial Health Survey
Why do I need 3 contacts?
You are only asked to provide contact information for these individuals in case we lose contact with you. This would likely only occur in extreme circumstances (e.g. sudden death). We would attempt to establish your health status by reaching out to your first contact, if they were unable to provide information about your status, we would move down the list. We will NEVER contact any of your listed persons for any other reason. Your personal health information will not be revealed to your contacts.
I have more questions, concerns about this study, and/or would like more information, what can I do?
Visit the contact us section of this website, if you have study specific questions or concerns that were not answered by this website, or if you would like to leave a comment for the study team.
The resources section of this website lists websites that provide more general information about heart disease and blood cancer.