Should I involve my family?
Involving family members in this study can help us learn more about how ovarian cancer develops and may be passed down in families, as well as new methods for ovarian cancer prevention. We strongly encourage you to tell your relatives about the MiDe Study by sharing this website with them.
How will the MiDe Study help me or my family?
The MiDe Study aims to help researchers learn information about patterns of ovarian cancer that can be used to develop an early ovarian cancer detection test. We hope that this study will improve our ability to predict cancer risk for each person who is at high risk for ovarian cancer, and to offer more options for cancer screening, prevention, and treatment.
Your participation in this study will also give you the option to receive results that may have meaning for your health and/or the health of your family.
How can I share the MiDe Study with my family?
Family members can join MiDe by reaching out to us or by filling out this quick form. On the form, please have your relative list your name and relation to you. This helps us link relatives to one another to better understand family cancer risk.
Our study team might reach out to you to suggest which family members would be most helpful to include in this study. With your permission, we can directly contact your relatives to help enroll them.
How can my family members get genetic testing?
Your family members can get genetic testing in a few ways:
- From their own healthcare provider
- By finding a genetic counselor close to them using the search tool “Find a genetic counselor” at NSGC.org
- By making an appointment in our Center for Cancer Genetics and Prevention
Is there any cost to me for participating?
There is no cost to be in this study. You will not be charged for blood draws that occur as part of this research study. We make every effort to coordinate our blood sample collection with one of your medical visits when a blood draw is already scheduled. If you are having your blood sample collected at an outside clinic or an in-home visit, this will be covered by our team as well.
How will you protect my privacy and personal information?
A federal law, called HIPAA, protects all of your medical information. We also take additional care to protect your personal information. Study data will be secured in a database protected by a password and is within the “firewall” created by our institution (Dana-Farber Cancer Institute). The database is on a secure server that only study staff can get to. Hard copies of the study data will be kept in locked file cabinets that only study staff can get to.
Can I leave the MiDe Study after I have joined?
Yes, you can leave the MiDE Study at any time. Your participation in a reseach study is completely voluntary, and you can withdraw your consent at any time. If you have any question about your participation in the MiDE study, please contact us.
Who has access to my genetic data?
Our study team will have access to your genetic data, which will be stored in password-protected files. As in the consent form, some data must be deposited in government databases but without your personal identifying information.
If your family members decide to get genetic testing through their doctors for a gene change identified in the family, the genetic testing lab may also have your genetic testing report.
How long will my samples from this study be stored?
Samples you provide for this study will be stored indefinitely, but if at any point you decide to withdraw from the study, your data and samples will no longer be used.
Will I receive results from this study?
Most tests done on samples in research studies are only for research and have no clear meaning for health care. If research with your identifiable information or samples gives results that do have meaning for your health or your family’s health, you will have the option on the study consent form to tell us if you would want to know this kind of information.
You will be able to indicate what information, if any, you want to know should it be available. If you do indicate you would want to know, researchers will contact you to let you know what they have found.
What support organizations are available to me and my family?
Your generous support helps make our work possible. If you would like to support our research, please fill out this form, and our team will reach out to you.