A multidisciplinary, cross-functional team was launched in 2010 at Mayo Clinic with the purpose of delaying or preventing heart transplantation for hypoplastic left heart syndrome (HLHS) patients. A transformative investment by Todd and Karen Wanek forged the world’s only dedicated team, challenged with establishing a growth based network that integrates research and clinical innovation to dramatically improve the care of individuals with HLHS. Within the first 5 years, the HLHS team has launched two ongoing FDA monitored cell‑based clinical trials for congenital heart disease using umbilical cord blood and bone marrow derived cells. The team also produced over 250 whole genome sequences from HLHS families along with thousands of bioengineered stem cell lines capable of producing autologous cardiac tissues from these individuals. This is the world’s largest HLHS biorepository that supports state-of-the-art genotype/phenotype discovery sciences.
Now, in an effort to reach as many HLHS families as possible, the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome is currently building the HLHS Consortium. The HLHS Consortium aligns regional centers into a nationwide partnership powered by Mayo Clinic research to accelerate and grow HLHS focused innovation, discovery sciences and clinical expertise. The overall mission of the consortium is to establish superior clinical management to intervene with early diagnostics and therapeutics before heart failure in order to prevent heart failure at all stages of HLHS.