The HLHS biorepository at Mayo Clinic provides a system for continued learning about HLHS.
Researchers in the Todd and Karen Wanek Family Program for HLHS at Mayo Clinic are assembling family histories, gathering tissue and cell samples, collecting genomic information, and obtaining cardiac images from consenting people with HLHS and their relatives on an ongoing basis.
To maximize the usefulness of this vast amount of information and material, the Todd and Karen Wanek Family Program for HLHS combines it all in one place: a secure vault called a biorepository.
Program investigators aim to build and maintain a comprehensive, integrated HLHS biorepository that enables current and future research efforts.
The HLHS biorepository houses and links together samples and data collected from consenting patients during research carried out in the imaging and outcomes, human genetics and regenerative medicine focus areas of the Todd and Karen Wanek Family Program for HLHS at Mayo Clinic. Biorepository components include:
- Patient and family histories. Clinical records and detailed family histories of people with HLHS are at the foundation of the biorepository.
- Heart images. When clinicians conduct echocardiograms and cardiac MRIs to quantitate patients' right ventricular performance, the images are added to the biorepository.
- Tissue and cells. In the regenerative medicine component of the program, researchers gather, reprogram and compare tissue and cell samples from people with HLHS and their parents. The samples are then placed in the biorepository to ensure their availability for future analysis.
- Genomic data. Findings from sequencing and bioinformatics work completed by the program's human genetics team in the search for possible HLHS-causing genetic mutations become part of the biorepository.