If you enrolled at a collaborating site, you may have been selected to receive a copy of Family Heart Talk, a communication tool that we are testing as part of our research study. To open this online copy, download it here. You will need a password, which should have been given to you at enrollment. If you do not have your password, please contact us.
other tools you can use to help communicate with your family members about DCM genetic risk and invite them to participate in our study:
Dear Family Member Letter
Dear Family Member(s)
I am participating in the Dilated Cardiomyopathy (DCM) Research Project at The Ohio State University because I (or a family member) have been diagnosed with dilated cardiomyopathy (DCM). The goal of this study is to identify the gene changes (mutations) that can lead to heart conditions such as DCM.
People with DCM have enlargement of the left side of the heart and reduced ability to pump blood. DCM can cause serious complications, including fatigue, shortness of breath, or sudden cardiac death. However, some people with DCM have no symptoms. I was informed that this condition can be genetic even if no one else in the family appears to have DCM. It is usually inherited in autosomal dominant pattern, which means that first-degree relatives (parents, children, siblings) have a 50/50 chance of also having DCM.
Medical guidelines recommend that genetic testing and counseling be provided to people with DCM, and that their first-degree relatives (parents, children, brothers and sisters) have a heart check with an echocardiogram, an electrocardiogram, and a physical exam. Genetic testing for DCM is available through this study. A genetic counselor will inform you of your results.
Enrollment in the study involves a heart check for family members (if not previously done), a blood sample and authorization to obtain cardiac medical records, if any.
If a genetic result is found, this information may lead to better medical management options for family members.
You can give me permission to share your contact information with the study staff or you can contact the study directly. You are not obligated to participate in this study. Regardless of your decision, a heart check, genetic counseling and consideration of testing are recommended for all first-degree family members of people with DCM. You can ask your doctor to order this testing. Additional information can be found by visiting the study website: www.DCMProject.com.
Phone Script to Family Members
to invite them to participate
Hi, how are you?
I am calling because I just agreed to be in a research project to help our family and other families like ours learn about a specific heart disease called Dilated Cardiomyopathy, or DCM.
The researchers at The Ohio State University want to contact you to tell you about it and to ask for your help.
I told them that I would reach out to our family and ask if it was OK with you to let the research team contact you. Your participation would be good for our family. It would also help other families like ours.
Is it ok to give them your contact information? They will explain the study and what you need to do. You can say yes or no when you talk with them.
You can also contact study staff directly at 877-800-3430 or DCM.Research@ osumc.edu.
ideas for an email message to family members
Hi, I wanted to let you know about a research study that I am a part of. I can send (or email) you a brochure about it. It’s about how family members may inherit a specific kind of heart disease called Dilated Cardiomyopathy or DCM, and what you can do about it. I would like you to consider being a part of this study. It would help all of us in our family to have your participation. Can the study team contact you to explain what would be needed from you and why this is important? You can also contact study staff directly at 877-800-3430 or DCM.Research@ osumc.edu.
Yours truly, __________