The physicians within SHaRe know that specialized healthcare goes beyond the people you work with at the hospital. True healthcare is a team approach involving the patient and their family, their community, researchers, pharmaceuticals, and their team of doctors. It’s a complete picture of a complicated issue. It’s the way healthcare should work and it’s the way the SHaRe investigators are determined to make it work.
Download the SHaRe brochure here.
Diagram by: Connor Borsari, age 13
Goal of the Cardiomyopathy Registry: Advance Understanding of HCM and DCM
SHaRe aims to advance the understanding of Hypertrophic and Dilated Cardiomyopathy. By harmonizing and pooling detailed, longitudinal genetic and clinical data from experienced investigators across many centers of excellence, this registry will not only be larger, but also better than what has come before.
Through family histories, clinical characteristics, imaging and laboratory data, we will gain insights into genetic and environmental contributions to cardiomyopathy.
Better understanding clinical predictors and outcomes will allow us to test current wisdom and to generate more accurate predictors of risk and disease progression. We will begin to overcome historic limitations, critically re-defining phenotype and modifiers of outcome in sarcomeric cardiomyopathies.