Frequently Asked Questions
Participating in research can be intimidating and confusing. To help clarify the EPI-Q study and address concerns, we’ve answered some commonly asked questions for you.
Who is conducting the study?
The EPI-Q study (HUM00155782) is being conducted by a research team led by Dr. Bhramar Mukherjee at the University of Michigan. The study is sponsored by Precision Health at the University of Mihcigan, the University of Michigan Rogel Cancer Center, and the University of Michigan Department of Biostatistics. This is not funded by companies and was not initiated by the government.
How to I enroll?
If you are enrolled in the Michigan Genomics Initiative study, you will receive an email or postal mailing inviting you to complete the survey electronically. If you haven’t received an invitation or are unsure if you are enrolled in the Michigan Genomics Initiative, you may contact us at (734) 764-5391 or at firstname.lastname@example.org to see if you are eligible to participate and receive an invitation. Unfortunately, only those who are enrolled in the Michigan Genomics Initiative are eligible to participate in the EPI-Q study at this time.
What is the Michigan Genomics Initiative (MGI)? How do I know if I’m enrolled in MGI?
The Michigan Genomics Initiative (MGI) is a biobank that started at the University of Michigan in 2012. Since it began, it has recruited over 60,000 individuals seeking treatment at the University of Michigan Health System. MGI participants provide a sample (e.g. blood) for DNA analysis, permission to access their electronic health record (EHR), and allow for recontact for future research. Approved U-M researchers can use this data and link it to other data. If you receive an invitation to EPI-Q, that means you are enrolled in MGI. To find out if you are enrolled in MGI, contact the EPI-Q study team by phone at (734) 764-5391 or by email at email@example.com. You may also contact us if you want to withdraw from MGI.
How do I complete the survey?
Via the MyDataHelps mobile application (iOS) (Android) or website. The app is developed and maintained by CareEvolution, who has received all required regulatory, security, and compliance approvals to safely handle your survey data. You will be required to complete the consent form before you are allowed to complete the baseline survey. More instructions for completing the consent form and the survey are included in the study invitation.
Do I have to complete it via a mobile app?
No, but we prefer that you complete the survey using the mobile app. You can also complete the survey on your computer via a web browser (instructions included in study invitation). You may also contact the study team request to receive a paper version of the consent form and the survey in the future. To request a paper version, contact the EPI-Q study team by phone at (734) 764-5391 or by email at firstname.lastname@example.org.
Who will have access to my survey results?
University of Michigan researchers may request access to your data. Before accessing your data, they must do the following:
- Receive the necessary regulatory approvals/exemptions.
- Demonstrate that they will securely handle your data.
- Agree to not share any information that could be used to identify you.
- Describe what they intend to research with the data. They will not be allowed to use your data for any purpose other than the purpose they receive approval for.
Will researchers be able to access my name?
Generally, no. Research is usually conducted only with your survey responses. However, it is possible that a researcher may request access to your identifiable information. They must meet strict security and regulatory approvals to access this information, must agree not to share any information that could be used to identify you, and cannot share or publish data with your name. Your name will not appear in any research published using your data.
When can I expect to receive my incentive?
You should receive your ancestry results up to a year after you complete the baseline survey. The reason for this is that it takes a lot of time and money to process the DNA you provided as part of your participation in the Michigan Genomics Initiative.
If you have more questions about receiving your ancestry report, contact the EPI-Q study team at (734) 764-5391 or by email at email@example.com.
How do I get my ancestry results?
After completing the baseline survey, your ancestry results will be shared with your through the MyDataHelps application. You will not receive ancestry results if you do not complete the baseline survey. More information about what is included in the ancestry results and how to interpret it can be found here.
How do I withdraw from the study? What will happen to my data?
You may withdraw from the study at any time by contacting the study team at (734) 764-5391 or by email at firstname.lastname@example.org. Your data will not be shared with researchers after you withdraw from the study. However, we will not be able to take your data from researchers who have already accessed it.
I still have questions that are not answered.
Please contact us by phone at (734) 764-5391 or by email at email@example.com if you have any remaining questions.