In 2014, MyoKardia helped form the Sarcomeric Human Cardiomyopathy Registry (SHaRe), a first-of-its-kind patient registry that brings together a group of experienced, knowledgeable cardiologists and geneticists from the United States and Europe with a passion for helping people with genetic heart disease.
SHaRe is a multi-center, international repository of clinical and laboratory data on individuals and families with genetic heart disease developed as a collaboration with several world-leading cardiovascular centers. The goal of SHaRe is to advance the understanding of hypertrophic cardiomyopathy (HCM) and dilated cardiomyopathy (DCM). By building the world’s most robust database of its kind, cardiovascular geneticists and research-based cardiologists will be able to expand their knowledge base and generate fresh insights. Our research initiatives support the development of targeted and effective approaches in the treatment of genetic heart disease.
SHaRe was developed in collaboration with investigators from ten world-leading cardiovascular centers and currently contains de-identified data on over approximately 10,000 subjects. SHaRe aims to grow into the world’s most robust database of clinical information on genetic heart disease through relationships with additional clinical investigators and cardiovascular centers of excellence.
MyoKardia is leveraging insights gleaned from the large database of clinical information to better tailor its programs in HCM and DCM, and advance the company’s goal of enabling precision medicines for patients with genetic heart disease. By conducting outcome-based studies in genetically pre-defined patient populations, MyoKardia has the opportunity for early proof-of-concept data supporting a pipeline of first-ever medicines where no oral targeted therapies currently exist.
SHaRe's vision is to create hope for the future of those diagnosed with heritable forms of cardiomyopathy through connecting patients to research and research to patients.
For more information, please visit www.theshareregistry.org.