We aim to advance our understandings of the genetics of Dilated Cardiomyopathy (DCM) by gathering a much larger number of DCM families for study. The DCM Consortium was created as a new initiative of the DCM Research Project to achieve this purpose. Expanded by Dr. Ray Hershberger from 2012 to 2014 at The Ohio State University, the DCM Consortium successfully competed in early 2015 for National Institute of Health (NIH) support for the Precision Medicine Study. In this study, we enroll individuals with DCM and their family members, conduct genetic testing, and in a randomized study learn how families with DCM communicate genetic risk.
The goal of this website is to provide relevant information about the genetics of DCM in families while serving all study participants from both of our studies. We also inform health care professionals with our recommendations to manage genetic DCM and provide an update on DCM research.
FAMILIES IN THE PRECISION MEDICINE STUDY.
Families who participate in the Precision Medicine Study are those enrolled at collaborating sites in the DCM Consortium. Some of you may need access to a communication tool entitled “Family Heart Talk.” If you were given a password, please visit the Study Materials section for this and other study documents.
FAMILIES IN THE DCM DISCOVERY STUDY.
We continue working with all of the DCM families who have previously participated with us in the Familial Dilated Cardiomyopathy (FDC) Project and FDC Study, now named the DCM Discovery Study. While the name has changed, we continue with the same aims, to discover new DCM genes and to translate this new knowledge into clinical care. We also welcome new patients and family members with DCM who are unable to participate in the Precision Medicine study. Patients and providers: please contact us if you are interested in participating, would like to refer a family, or if you have any questions.
The DCM Precision Medicine Study includes the enrollment of 1,300 patients affected with idiopathic DCM and their family members. As of March 15, 2020, we have completed proband enrollment. We plan to continue the enrollment of family members through April 30, 2021.