Clinical Trial

Congenital Heart Disease Project to Understand Lifelong Survivor Experience (CHD PULSE)

The purpose of this study is to determine the long-term outcomes of patients who survived interventions for Congenital Heart Disease (CHD) into adolescence and adulthood. We will compare the quality of life and medical, neurocognitive, and psychosocial outcomes for CHD survivors to the outcomes of the general population as well as to their siblings (if available). Additionally, this study aims to understand the risk posed by COVID-19 to all pediatric onset heart disease patients as COVID-19 has increasingly been recognized as inciting a broad inflammatory response that is particularly injurious to the cardiovascular system and may influence the survival of this population. This study will utilize a long-standing clinical registry, the Pediatric Cardiac Care Consortium (PCCC), now linked with the National Death Index (NDI) and the Organ Procurement Transplant Network (OPTN), to survey adult survivors of CHD in the US regarding their long-term outcomes and facilitate mortality surveillance on pediatric heart disease patients with CHD and with non-congenital heart disease (non-CHD). This will result in a large, diverse longitudinal registry of patients with pediatric heart disease in the United States, the first of its kind.

• Circulatory System
• CHD
• Congenital Heart Disease
• Lifelong Survivor
• Pediatric
• Surgery