A Comprehensive Registry Study of the Whole Life Cycle of Patients With Congenital Heart Diseases

What this Trial Is About

Researchers are conducting an observational study to gather information on the prevalence, treatment, and outcomes of congenital heart disease (CHD) throughout patients' lives in China. The study focuses on various stages, from fetal diagnosis to early treatment of severe CHD in newborns, and includes standardized care for pregnant patients with CHD. The aim is to improve diagnosis and treatment at participating hospitals, especially for complex cases, and to promote uniform clinical practices in cardiovascular care across China, ultimately enhancing medical service quality and informing national treatment guidelines. The study will be carried out by Beijing Anzhen Hospital and the National Clinical Research Center for Cardiovascular Diseases, involving over 20 hospitals over five years. Starting January 1, 2024, each hospital will collect data on CHD inpatient cases monthly. A dedicated website will support data collection, education, training, and experience sharing. The project includes regular analysis and reporting of quality indicators, with guidance and support provided to hospitals to address issues and improve care. Hospitals showing excellence and improvement will be recognized to encourage overall quality advancement. Participants will be patients diagnosed with various forms of congenital heart disease. The study will monitor outcomes including mortality within the first week after surgery, rates of integrated prenatal and postnatal diagnosis and treatment, surgical intervention rates in newborns, and medium- to long-term survival and reoperation rates up to five years after discharge. Data collection will continue monthly, with ongoing education and quality improvement efforts, and the study is expected to last until January 1, 2030.

A Comprehensive Registry Study of the Whole Life Cycle of Patients With CHD